Research

Men's estimates of prostate cancer risk and self-reported rates of screening Jeanette E Ward, Ann-Maree Hughes, Geoffrey H L Hirst and Lorraine Winchester For editorial comment, see Stricker & Eisinger Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Authors' details - ©MJA1997 Abstract Objective: To determine rates of prostate cancer screening and predictors of men's participation in this screening in the light of national recommendations against prostate cancer screening. Design: Community-based study (computer-assisted telephone survey). Setting: Central Sydney Area Health Service. Participants: Randomly selected men aged 40-80 years. Results: 340 men participated (65% response rate). While the true lifetime (0-74 years) risk of developing or dying from prostate cancer is reported to be one in 18 (6%) and one in 65 (1.5%), respectively, 37% of respondents thought that at least one in five men (20%) would develop prostate cancer before the age of 75 years and 11% that one in five (20%) would die from it. Twenty-two per cent of men aged 50 years or over had been screened for prostate cancer within the previous 12 months. Ever worrying about prostate cancer and bothersome urinary symptoms independently predicted the probability of screening within the previous year. Sociodemographic characteristics such as age, occupation and country of birth were not associated with screening. Conclusions: Public health initiatives to discourage prostate cancer screening should focus particularly on men with bothersome urinary symptoms and those who worry about prostate cancer. Accurate information about the low risks of dying from prostate cancer needs to be communicated, and the speculative nature of current evidence in support of screening as a means of reducing this risk should be emphasised. MJA 1997; 167: 250-253 Introduction Despite repeated advice to the contrary, screening for prostate cancer is being requested by patients and conducted by doctors. Advice against screening has come from a policy statement for health professionals released in 1995 by the Australian Cancer Society,1 and a 1996 report of a multidisciplinary committee convened by the Australian Health Technology Advisory Committee on the basis that the evidence did not meet accepted criteria for benefits, risks and costs.2 In addition, the National Health and Medical Research Council (NHMRC) evidence-based guidelines for the management of men with uncomplicated lower urinary tract symptoms (LUTS)3 state that there is no evidence that prostate specific antigen (PSA) tests are required for men with uncomplicated LUTS as men with these symptoms are at no greater risk of prostate cancer than asymptomatic men.4 Data indicating that screening is occurring come from the Department of Veterans' Affairs,5 as well as surveys of urologists6 and general practitioners (unpublished data). In describing this "conundrum", Horner identified a pressing need for research to support educational programs for men, focusing on "strategies to combat uninformed patient demand".7 While the Australian Health Technology Advisory Committee guidelines advocate national action involving the NHMRC,2 the need for health services to intervene actively at a local level to discourage prostate cancer screening has also been recognised in New South Wales.8 In the absence of more recent data, we used the opportunity of a large population-based study about men's health to determine the prevalence and predictors of participation in screening for prostate cancer in the area defined by the Central Sydney Area Health Service. Methods The study was approved by the Royal Prince Alfred Hospital Ethics Review Committee. Community sampling Two thousand names, addresses and telephone numbers within the 35 postcodes constituting the Central Sydney area were randomly selected from the Electronic White Pages.9 To maximise participation rates, each household received a one-page letter outlining the Men's Health Study and anticipating telephone contact, supported by a media release to further publicise the study. The initial sample size of 2000 was estimated to be sufficient to provide between 250-350 completed surveys given an estimated prevalence of 38%10 of eligible male respondents in contacted households and a conservative consent rate. Computer-assisted telephone interview survey A market research company with computer-assisted telephone interview facilities contacted all 2000 households between 26 November and 12 December 1996 on weekdays between 1500 and 2100. Where the first contact was unsuccessful, a further five attempts were made at different times and on different days. Men aged between 40 and 80 years residing in the household and fluent in English were eligible to participate. If there was more than one man in the household meeting these criteria, the one with the most recent birthday was asked to participate. Due to the sensitive nature of the survey, all telephone interviewers were mature females with previous experience in conducting health-related surveys. A briefing session for interviewers was conducted to address potential difficulties with medical jargon, to ensure sensitivity towards the issues and to standardise the interviews. Survey instrument At the beginning of the interview, respondents were asked standard sociodemographic questions, as well as whether they had ever been diagnosed with a urological condition and questions modified from the International Prostate Symptom Score11 to assess the presence of and degree of "bother" attributable to urinary symptoms. We then asked respondents five questions about prostate cancer. 1. "Have you ever worried that you might have prostate cancer?" Those answering "yes" were asked "For what reasons?". 2. "Have you had any test to detect prostate cancer in the last 12 months?" Those answering "yes" were asked to name the test(s). 3. "Have you heard of any tests for prostate cancer?" 4. "Out of 100 Australian men, how many or what percentage do you think will get prostate cancer before the age of 75?" If the respondent was unable to quantify his response, the interviewer was instructed to establish a range by saying "Would it be more or less than 1%? Less than 5%? Between 5% and 9%? More than 10% or more than 20%?" until an answer was given. 5. "Out of 100 Australian men, how many or what percentage do you think will die from prostate cancer before the age of 75?" If necessary, an answer to this question was prompted in the same way as Question 4. For Questions 4 and 5, interviewers were unaware of the correct answers. Questions 4 and 5 were modelled on previous research. 12 Data analysis Data were analysed using SAS13 and Epi Info.14 We used chi-squared tests to examine associations between knowledge of prostate cancer screening tests and eight respondent characteristics: age (40-49, 50-59, 60-69, 70-80 years); country of birth (Australia v. other); socioeconomic status based on occupation (manager/ administrator and professional/para-professional combined v. all other categories [tradesperson/clerk/salesperson and personal service worker/plant and machine operator/driver and labourer]);15 education (up to and including Intermediate or School Certificate [Year 10] v. Leaving or Higher School Certificate [Year 11 or 12] and beyond); moderate or severe "bother" from urinary symptoms (a score equal to or greater than six from a possible range of 0-18); ever worrying about prostate cancer (yes v. no); estimate of risk of developing prostate cancer (correct or lower estimate v. overestimate); and estimate of risk of death from prostate cancer (correct or lower estimate v. overestimate). Jelfs et al. report a lifetime risk of developing prostate cancer of one in 18 (6%).16 We considered an estimate of 10% or greater to be an overestimate of incidence risk. Using the Jelfs data,16 we calculated the lifetime risk of dying of prostate cancer as one in 65 (1.5%). We considered an estimate of 5% or greater as an overestimate of mortality risk. For the sample of men 50 years and over, we used chi-squared tests to determine associations between the outcome variable -- having had either a prostate specific antigen test, a digital rectal examination, or both, within the previous 12 months -- and these eight variables as well as knowledge of prostate cancer tests. Logistic regression analysis was performed, using significant univariate variables and any plausible non-significant variable. Results Response rate and characteristics of the sample Of 2000 randomly selected households, 1481 (74%) were ineligible. Of the remaining 519 households with an eligible male resident, 340 agreed (65% response rate). Men who refused were significantly older than those who participated (t27.49 = 4.19; P < 0.01). Compared with 1991 Census data12 (Box 1), the sample under-represented older men. No respondent indicated a past history of prostate cancer. Respondents' worry about prostate cancer, estimates of risk and knowledge of tests Ninety-nine men (29%) indicated they had ever worried about prostate cancer. The three most frequently cited reasons were: presence of urinary symptoms (36 men [11%]), age (26 men [8%]), and media publicity (24 men [7%]). Of the sample, 216 men (63%) overestimated lifetime risk of developing prostate cancer (Box 2). Respondents were significantly more likely to overestimate the risk of death from prostate cancer than the risk of developing it (McNemar's test, 10.800; df = 1; P = 0.001). Ever having worried about prostate cancer was not associated with correctly estimating the risk of developing it or the risk of dying from it. Of the total sample, 237 (70%) and 228 (67%) required no prompting to estimate lifetime risk of developing or dying from prostate cancer, respectively. One hundred and seventy-two men (51%) reported they had heard of one or more tests for prostate cancer. Respondents who had heard of any test were more likely to be managers or professionals than to have other occupations (chi-squared = 4.04; df = 1; P = 0.044) or were educated to Year 12 or beyond (chi-squared = 5.49; df = 1; P = 0.019). Knowledge of tests was unrelated to age, country of birth, perception of risk, "bother" from urinary symptoms or anxiety. Rates and predictors of prostate cancer screening within the previous 12 months Of the total sample, 52 men (15%) had had at least one prostate cancer screening test within the previous 12 months (Box 3). Almost all tests (97%) were reported by men 50 years or older, yielding an annual screening rate of 22% for this older group. For the subsample of 186 men aged 50 years or over, univariate analyses revealed only two variables to be significantly associated with having had a prostate cancer screening test within the past year: moderate or severe "bother" from urinary symptoms (chi-squared = 13.41; df = 1; P < 0.001), and "ever worrying" about prostate cancer (chi-squared = 18.38; df = 1; P < 0.001). Knowledge of available tests and other sociodemographic variables were not associated with having had a test within the past year. However, as age was a potential confounder, it was included with the two significant univariate associations in the logistic regression analysis. After adjustment, "bother" and "anxiety" remained independent predictors (Box 4). Discussion Just over one in five of the men in our study 50 years or over had had a prostate cancer screening test within the previous 12 months, a rate almost double that given in an earlier report of national claims data.5 Screening was significantly more likely among those who had ever worried about prostate cancer or were bothered by urinary symptoms. In contrast to research in other countries demonstrating that economic and ethnic factors influence participation in prostate cancer screening,17,18 our study showed no association between screening and men's occupation, education or country of birth. As a priority for public campaigns, men who experience uncomplicated LUTS -- nocturia, frequency, dribbling, urgency, hesitancy or reduced stream -- in the absence of haematuria need to be reassured that there is no empirical evidence of a relationship between such symptoms and early prostate cancer.3 Men's anxiety about prostate cancer may also be explained, in part, by their overestimation of the actual risks of prostate cancer. More than a third of respondents thought that at least one in five men would develop prostate cancer before the age of 74 years, and 11% thought that one in five would actually die from this disease before that age. Reasons for consistent overestimation of risk remain speculative but might reflect extensive media coverage of prostate cancer, possibly fuelled by commercial interests, which increases men's anxiety, and, in turn, raises their perception of risk.19 In contrast, McCormick20 has argued that informed public participation in screening should be founded on clear messages about absolute risk, the evidence from rigorous randomised trials for reduction in risk, the costs and adverse outcomes. Our study is the first to quantify a considerable gap between men's perceptions of risk and the actual risk. When provided with impartial information on an individual basis about the risks and unknown benefits of prostate cancer screening, men are less inclined to have a screening test.21 Given our collective failure to convey accurate health risk information to the public about risks for other cancers,9 risk reduction22 or screening,23 a systematic approach to the development, implementation and evaluation of a public health initiative to discourage prostate cancer screening is required. The recent release of the guidelines for the management of uncomplicated LUTS in men3 provides a focus for such an initiative. Our study suggests that men who are anxious about prostate cancer or have bothersome urinary symptoms represent priority target groups for educational messages via general practice, men's service and recreation clubs, mass media and peak groups such as the Council of the Ageing and the Consumers' Health Forum. Because of the limitations of our study, we also recommend that a dedicated survey about prostate cancer be conducted which examines in depth men's knowledge of indolent and aggressive cancer types, their health beliefs and attitudes towards early detection, their awareness of the speculative and controversial nature of screening, and their knowledge of treatment options and their effectiveness. Men's recall of the recommendations of their GP in either promoting or discouraging prostate cancer screening could also be ascertained. As female partners represent a key source of health information for men,24 a concurrent survey of partners of men in these age groups is also recommended. Acknowledgements The Men's Health Study was conducted for the NHMRC Working Party developing guidelines for the management of lower urinary tract symptoms in men with funds from the Commonwealth Department of Health and Family Services. We thank members of the Working Party for comments on survey protocols; the men who participated in the computer-assisted telephone interview and the Hunter Valley Research Foundation for diligent administration of the survey; Jo Williams and the Central Sydney Area Health Service Public Relations Unit for assisting with the media release; and Neil Donnelly for statistical advice. References Australian Cancer Society. Prostate cancer screening: guidelines for health professionals. Cancer Forum 1995; 19: 47-50. Australian Health Technology Advisory Committee. Prostate cancer screening. Canberra: AGPS, 1996. NHMRC clinical practice guidelines. The management of uncomplicated lower urinary tract symptoms in men. Canberra: AGPS, 1996. Catalona W, Ritchie J, Ahmann F, et al. Comparison of digital rectal examination and serum prostate specific antigen in the early detection of prostate cancer: results of a multicenter clinical trial of 6,630 men. J Urol 1994; 151: 1283-1290. Parkes A, Killer G. Prostate-specific antigen -- is it already being used as a screening test? Med J Aust 1994; 161: 722. Urological Society of Australasia. Prostate screening, a personal choice: surgeons. Media release, 27 August 1996. Horner D. Prostate cancer: a challenge for health promotion. Health Promot J Aust 1996; 6: 3-7. Cancer Expert Working Group. Cancer control NSW goals and targets. North Sydney: NSW Health, August 1995. Oz On Disc. Sydney: Read Only Memory Pty Ltd, May 1996. Rissel C, Winchester L, Hodge W, et al. Health outcome indicators for Central Sydney. Sydney: Needs Assessment & Health Outcomes Unit, Central Sydney Area Health Service, August 1996. Cockett A, Aso Y, Denis L, et al. Recommendations of the International Consensus Committee. In: Proceedings of the International Consultation on Benign Prostatic Hyperplasia (BPH). Paris: SCI, June 1991: 279-281 (ISBN 2-905744-11-1). Clover K, Redman S, Boyle K, et al. Community knowledge of cancer. Health Promot Int 1991; 6: 93-101. SAS [computer program], version 6. 3rd ed. Cary, NC: SAS Institute, 1990. Dean AG, Dean JA, Burton AH, Dicker RC. Epi Info, version 5: a word processing database, and statistics program for epidemiology on microcomputers. Stone Mountain, Ga: USD Inc, 1990. Australian Bureau of Statistics. Australian standard classification of occupations. 1st ed. Canberra: AGPS, 1992. Jelfs P, Coates M, Giles G, et al. Cancer in Australia 1989-1990 (with projections to 1995). Canberra: Australian Institute of Health and Welfare, 1996 (Cancer Series No. 5). Schwartz K, Kau T, Severson R, Demers R. Prostate-specific antigen in a community screening program. J Fam Pract 1995; 41: 163-168. Williams R, Boles M, Johnson R. Use of prostate-specific antigen for prostate cancer screening in primary care practices. Arch Fam Med 1995; 4: 311-315. Wasson J. Prostate cancer fears and facts. In: Proceedings of the National Men's Health Conference; 10-11 August 1995. Canberra: AGPS, 1996: 69-72. McCormick J. Medical hubris and the public health: the ethical dimension. J Clin Epidemiol 1996; 49: 619-621. Wolf A, Nasser J, Wolf A, Schorling J. The impact of informed consent on patient interest in prostate-specific antigen screening. Arch Intern Med 1996; 156: 1333-1336. Hancock L, Sanson-Fisher RW, Redman S, et al. Knowledge of cancer risk reduction practices in rural towns of NSW. Aust N Z J Public Health 1996; 20: 529-537. Cockburn J, Redman S, Hill D, Henry E. Public understanding of medical screening. J Med Screen 1995; 2: 224-227. Norcross W, Ramirez C, Palinkas L. The influence of women on the health care-seeking behaviour of men. J Fam Pract 1996; 43: 475-480. (Received 24 Feb, accepted 22 May 1997) Subsequently cited in Prostate-specific antigen testing in Australia and association with prostate cancer incidence in New South Wales by David P Smith and Bruce K Armstrong, Med J Aust 1998; 169: 17-20 Authors' details Central Sydney Area Health Service, Needs Assessment & Health Outcomes Unit, Sydney, NSW. Jeanette E Ward, PhD, FAFPHM, Director; Ann-Maree Hughes, BEd, GradDipAppSci(Nursing), Research Assistant; Lorraine Winchester, BSocSc(Hons), Data Manager. Taylor Medical Centre, Brisbane, QLD. Geoffrey H L Hirst, MB BS, FRACS, Urologist. Reprints: Associate Professor J E Ward, Central Sydney Area Health Service, Needs Assessment & Health Outcomes Unit, PO Box 374, Camperdown, NSW 2050. E-mail: jward AT nah.rpa.cs.nsw.gov.au ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Jeanette E Ward · Anne-Maree Hughes · Lorraine Winchester

A high incidence of melanoma found in patients with multiple dysplastic naevi by photographic surveillance John W Kelly, Josephine M Yeatman, Cheryl Regalia, Grahame Mason and Amanda P Henham Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - References - Authors' details - - ©MJA1997 Abstract Objectives: (1) To assess the incidence of melanoma in a cohort of patients with dysplastic melanocytic naevi (DMN) and the relationships between incident melanomas and preexisting naevi and between melanoma risk and numbers of DMN. (2) To examine the role of the patient versus the physician in detecting melanoma and the relative value of surveillance versus prophylactic excision. Design: Prospective cohort study. Patients and setting: Two hundred and seventy-eight adults, each with five or more DMN, were followed up for a mean period of 42 months in a private dermatology practice. DMN were clinically diagnosed. Results: Twenty new melanomas were detected in 16 patients, corresponding to an age-adjusted incidence of 1835/100 000 person-years, 46 times the incidence in the general population. Eleven were detected because of changes evident in comparison with baseline photographs and nine were detected by patients or their partners. Thirteen of the 20 melanomas arose as new lesions and only three from DMN. Melanoma risk rose with increasing numbers of DMN. Conclusions: Increasing numbers of DMN are associated with increasing melanoma risk. Surveillance (baseline photography and follow-up) enabled early diagnosis of melanoma and was very much more cost-effective in preventing life-threatening melanoma than prophylactic excision of DMN. MJA 1997; 167: 191-194 Introduction Eight case-control studies have indicated that dysplastic melanocytic naevi (DMN) are a strong and independent risk factor for the development of melanoma.1-8 Cohort studies show that individuals with DMN develop more melanomas than the general population.9-14 Only one cohort study has assessed the association of incident melanomas with preexisting naevi and the role of the patient versus the clinician in detection.10 None has examined an Australian cohort or addressed the relationship between DMN numbers and melanoma risk, the cost-effectiveness of surveillance compared with prophylactic excision or the occurrence of non-melanoma skin cancer in subjects with DMN. We followed a cohort of 278 Australian patients with DMN, using baseline skin surface photography to address these issues. Methods All patients who presented to the private dermatological practice of one of us (J W K) between March 1985 and November 1992 who required total body cutaneous examination were assessed for entry to the study. Any who had five or more clinically determined DMN and who were aged 18 years or more were offered baseline skin surface photography and follow-up on an annual basis. Over 80% had been referred for assessment of their atypical naevi or because of other melanoma risk factors, particularly a personal or family history of melanoma. In November 1993 all patients who had baseline photographs and had returned for at least one 12-month follow-up visit were entered in the study. The entry criterion of five DMN was based on the results of an earlier study that suggested to us that this number of DMN is associated with sufficient melanoma risk to justify entry to a screening program.2 A systematic set of 14 baseline photographs of the skin surface was used. A clinical photographer (A P H) worked with us in designing the views and did the photography, using anatomical site definitions to define standard views of recognisable body regions rather than using standard magnifications (Box 1). This reduced the number of views needed to cover the skin surface while providing adequate magnification. At entry to the study subjects were advised about their high risk of mela noma; three-monthly self-examination was recommended, the clinical features of early melanoma were discussed and appropriate sun protection measures were described. DMN were diagnosed clinically accor ding to published criteria.15 A naevus was considered clinically dysplastic if it had a macular component and showed at least three of the following five clinical features: ill-defined border, irregularly distributed pigmentation, background erythema, size greater than 5 mm, and irregular border. An exact count was made of the number of DMN and recorded in ranges 1-4, 5-10, 11-20, 21-50 and >50. The total number of MN was estimated and recorded in ranges <20, 21-50, 51-100 and 101-500. Patients were reviewed at 6- to 12- month intervals. Total body cutaneous examination was performed at each visit and the patient's pigmented lesions were compared with baseline photographs. Excisional biopsies were performed for any lesions that were clinically suggestive of melanoma and were not done routinely for histological confirmation of the presence of dysplastic naevi. All histo pathological specimens were examined at a single private pathology laboratory. All melanomas arising during the study were reviewed by one pathologist (G M). Melanomas detected at the initial visit were excluded from the analysis. Results The study enrolled 278 patients (162 women and 116 men). Mean age was 37 years (range, 18-67 years). Sixty-five patients (23%) had a family history of melanoma, 54 (19%) had a past history of melanoma, and 9 (3%) had both. None were from melanoma-prone families (as defined by a history of two or more affected first degree relatives). The mean period of follow-up was 42 months (range, 12-99 months). Twenty melanomas were detected in 16 patients over 955 person-years of follow-up. The age-adjusted incidence of melanoma in this group was 1835/100 000 person-years, 46 times the age-adjusted incidence of in-situ and invasive melanoma of 40/100 000 person-years for the population of Victoria in 1990 (G Giles, Anti-Cancer Council of Victoria, 1996, personal communication). The mean time from baseline to diagnosis of melanoma was 36 months (SD, 12 months; range, 11-75 months). Eleven of the 20 melanomas were detected at follow-up visits by comparison with the baseline photographs. These 11 patients were unaware of the changing lesion, and in most of these lesions the change would not have been apparent to the clinician without the use of photo graphs. Seven melanomas were detected by the patient as a change seen on self-examination and two were detected by patients' partners. Four were amelanotic melanomas that did not fulfil the normal diagnostic criteria for melanoma; nonetheless, one of these was detected by the patient. Detecting the 20 melanomas in these 278 patients required 1554 patient consultations (78 for each melanoma). Two hundred and ten biopsies were performed to assess changes observed during follow-up of 104 patients (10 biopsies for each melanoma detected). Not all changes in pigmented lesions led to a biopsy: if melanoma could be confidently ruled out on clinical examination and skin surface microscopy, the lesion was simply rephoto graphed. Histopathological results of these biopsies are shown in Box 3. Changing dysplastic naevi were the predominant source of clinically suspicious change; we do not know how many of these may have progressed to melanoma if they had not been removed. Nineteen non-melanoma skin cancers were detected during follow-up in this group of patients and removed: 16 basal cell carcinomas, one squamous cell carcinoma, one keratoacanthoma, and one Bowen's disease. Of the 16 patients who developed mela noma, five had a family history and seven had a past history of melanoma. Patients with melanoma were more likely to have had a previous melanoma (P = 0.001) and to have a family history of melanoma (P = 0.05) than those who had not. The percentage of patients in each risk group who developed melanoma is shown in Box 2. Boxes 4 and 5 show the incidence of melanoma in the study cohort in relation to the number of dysplastic naevi and total naevi. For an Australian population, the total numbers of naevi were not remarkable (61% had 100 naevi or less), but there were large numbers of DMN (59% had more than 10). Melanoma incidence correlated more closely with increasing numbers of DMN than with increasing total numbers of naevi. Subjects with 21 to 50 DMN developed melanomas at a rate of 3.3% per year. The 20 incident melanomas were all superficial spreading in type. Twelve were invasive and eight were in situ. All the invasive lesions were less than 0.6 mm thick and level II,16 except one amelanotic melanoma that showed a desmoplastic component and invaded to 1 mm in thickness and reached level IV.16 According to the criteria of Clark et al.,17 15 were classified as radial growth phase lesions and four as vertical growth phase; one was classified separately as desmoplastic. The melanomas were widely scattered over the skin surface, with six on the upper limbs, four on the upper back, four on the lower limbs, three on the chest, two on the abdomen, and one on the head. Seven melanomas showed histological evidence of an associated benign naevus (intradermal naevoid remnants in four and features of dysplastic naevi in three). Nine melanomas evolved as a change in a preexisting pigmented lesion that had been evident on baseline photos. In two of these nine the preexisting pigmented lesion was likely to have been a de novo melanoma. One of these patients had a stable pigmented lesion on the right side of her chest over six years. It was excised when it began to enlarge and darken and was found to be a level II, 0.6 mm thick melanoma without histological evidence of any associated naevus. A second patient had a tiny, 2 mm diameter lesion on his chest at his first visit. At his initial review visit, six months later, this had enlarged slightly and become more angular in shape. Histologically, this was a level I melanoma with no associated naevus. Discussion In this study the presence of five or more clinically determined DMN identified a group of patients with 46 times the general population incidence of melanoma. None of these patients came from melanoma-prone families, in whom Clark et al. originally described dysplastic naevi.18 Five cohort studies of patients with DMN who are not from melanoma-prone families have been published and all showed a very high rate of mela noma.9-13 These findings confirm those from case-control studies showing that DMN constitute a strong and independent risk factor for melanoma.1-8 Our age-adjusted incidence of mela noma of 1835/100 000 person-years is higher than that reported in other studies (692-709/100 000 person-years).9,11 This may be explained by the relatively large numbers of DMN in our patients (Box 4) and by the higher background rate of melanoma in Austra lia than in the United States and United Kingdom. We did not examine a cohort of control patients, but Marghoob et al. did.12 They found a 10-year cumulative risk of melanoma of 10.7% among 287 patients with at least one large naevus, one atypical naevus and 100 total naevi. This risk compared with a 0.62% 10-year risk among 831 controls selected from patients requiring annual dermatological follow-up for other reasons. We have intentionally continued to use the word "dysplastic" rather than "atypical". These naevi have been studied because they are believed to be associated with melanoma risk. There are other naevi that are clinically atypical and that are not linked with melanoma risk. Examples are naevus spilus, blue naevus and halo naevus. We prefer the term "dysplastic" because it clearly does not embrace these other atypical naevi. There are several definitions in the literature for syndromes associated with atypical or dysplastic naevi. One includes patients with a single atypical naevus, a large (>8 mm diameter) naevus and >100 total naevi.12 Another depends on distribution of atypical naevi on the anterior scalp, dorsa of the feet, iris or buttocks.19 DMN have been demonstrated to be independently associated with mela noma risk and are not always associated with large numbers of naevi or naevi in certain locations. We prefer not to include DMN in a syndrome definition but rather to consider them as a continuous numerical variable. There is evidence from this study (Box 2) and from two case-control studies of increasing risk with increasing numbers of DMN.2,11 The risk associated with a single DMN is likely to be small and insufficient to justify our follow-up regimen. It is also difficult to accurately diagnose a single naevus as being dysplastic or otherwise on clinical grounds, but much more easy to identify the patient with numerous DMN. It is also difficult to apply definitions of large numbers of naevi in different geographical locations. A recent Australian study reported a mean total count of naevi (>2 mm diameter) that approached 100 in 15-year-old adolescents, which is considered a large number in the United States and United Kingdom.20 The proportion of the Australian adult population with five or more dysplastic naevi has not been defined. One study of 1123 Australian schoolchildren aged 6-15 years showed that 2.7% had three or more dysplastic naevi according to the clinical definition applied here.21 Two-thirds of the incident melanomas in this study were de novo lesions. This finding is similar to those of studies that examine the histological frequency of associated naevi with melanoma, which suggest that 43%-77% of melanomas are new lesions.22-24 The predominance of de novo melanoma in these patients supports management by photographic surveillance rather than by attempts at prophylactic excision. If every one of the 5838 DMN present in our cohort of patients had been excised at the outset, only three of the incident melanomas would have been prevented. Ninety-three DMN were excised in the course of the study because of changes evident in comparison with photographs and because the possibility of melanoma could not be confidently excluded. These changing DMN would seem to be the most likely pigmented lesions to develop into melanoma, and it is possible that some would have progressed to melanoma had they been left in place. When consultations and biopsies are costed at the Australian Government's Medi care Schedule rates for 1997 and $100.00 is allowed per set of photo graphs, the cost of diagnosing each mela noma in this study is $5583. Prophy lactic excision of all dysplastic naevi would have cost $1118038 and would have prevented only three of 20 mela nomas, at a cost of $395038 each. The use of baseline photographs in patients with many floridly atypical pigmented lesions provided knowledge of the stability of many lesions that would otherwise have demanded excisional biopsy, and greatly reduced the number of excisions needed in managing such patients. Patients commonly presented with concern about a change in a particular pigmented lesion. Reference to the photographs usually revealed no change and the lesion remained under observation. Only 10 biopsies were necessary to detect each melanoma and less than one biopsy was necessary per subject in the course of this study. The melanomas incident in this study were detected at an earlier stage than other melanomas that were incident in the State of Victoria in 1990. In-situ melanomas comprised 45% of those seen in the DMN cohort and 33% of those seen in Victoria for 1990 (G Giles, Anti-Cancer Council of Victoria, 1996, personal communication). Median tumour thickness was 0.40 mm in our cohort and 0.77 mm for the State in 1990. Mean tumour thickness for invasive melanoma in the cohort was 0.44 mm compared with 1.40 mm (95% confidence interval, 1.29-1.51) for the State. It is possible that such close surveillance leads to the detection of some melanomas that would otherwise have remained undetected and may have regressed spontaneously or failed to progress and become life threatening. Such "harvesting" of early melanomas may contribute to the very high incidence observed. We conclude that numerous dysplastic naevi identify patients at high risk of melanoma. Baseline photography of the entire skin surface and 6-12-monthly surveillance provides an effective method for early detection of incident melanomas. As most new melanomas were de novo lesions, prophylactic excision of dysplastic naevi would not have provided a satisfactory alternative to follow-up and does not provide sufficient risk reduction to justify the cost and morbidity of the procedure. References Grulich AE, Bataille V, Swerdlow AJH, et al. Naevi and pigmentary characteristics as risk factors for melanoma in a high-risk population: a case-control study in New South Wales, Australia. Int J Cancer 1996; 67: 485-491. Holly EA, Kelly JW, Shpall SN, et al. Number of melanocytic nevi as a major risk factor for malignant melanoma. J Am Acad Dermatol 1987; 17: 459-468. Swerdlow AJ, English J, MacKie RM, et al. Benign melanocytic naevi as a risk factor for malignant melanoma. BMJ 1986; 292: 1555-1559. Augustsson A, Stierner U, Rosdahl I, et al. Common and dysplastic naevi as risk factors for cutaneous malignant melanoma in a Swedish population. Acta Derm Venereol (Stockh) 1990; 71: 518-524. Halpern AC, Guerry D, Elder DE, et al. Dysplastic nevi as risk markers of sporadic (nonfamilial) melanoma. Arch Dermatol 1991; 127: 995-999. Grob JJ, Gouvernet J, Aymar D, et al. Count of benign melanocytic naevi as a major indicator of risk for nonfamilial nodular and superficial spreading melanoma. Cancer 1990; 66: 387-395. Garbe C, Kruger S, Stadler R, et al. Markers and relative risk in a German population for developing malignant melanoma. Int J Dermatol 1989; 28: 517-523. Roush GC, Nordlund JJ, Forget B, et al. Independence of dysplastic nevi from total nevi in determining risk for nonfamilial melanoma. Preventive Medicine 1988; 17: 273-279. Mackie RM, McHenry P, Hole D. Accelerated detection with prospective surveillance for cutaneous malignant melanoma in high risk groups. Lancet 1993; 3421: 1618-1620. Rivers JK, Kopf A, Vinokur AF, et al. Clinical characteristics of malignant melanomas developing in persons with dysplastic naevi. Cancer 1990; 65: 1232-1236. Halpern AC, Guerry D, Elder DE, et al. A cohort study of melanoma in patients with dysplastic nevi. J Invest Dermatol 1993; 100: 346-349. Marghoob AA, Kopf AW, Bart RS, et al. Risk of cutaneous malignant melanoma in patients with "classic" atypical mole syndrome. Arch Dermatol 1994; 130: 993-998. Kang S, Barnhill RL, Mihm MC, et al. Melanoma risk in individuals with clinically atypical naevi. Arch Dermatol 1994; 130: 999-1001. Schneider JS, Moore DH, Sagebiel RW. Risk factors for melanoma incidence in prospective follow-up. The importance of atypical (dysplastic) nevi. Arch Dermatol 1994; 130: 1002-1007. Kelly JW, Crutcher WA, Sagebiel RW. Clinical diagnosis of dysplastic melanocytic nevi. J Am Acad Dermatol 1986; 14: 1044-1052. Clark WH Jr, From L, Bernadino EH, et al. Histogenesis and biological behaviour of primary human malignant melanoma of the skin. Cancer Res 1969; 29: 705-727. Clark WH, Elder DE, Guerry D, et al. Model predicting survival in stage I melanoma based on tumour progression. J Natl Cancer Inst 1989; 81: 1893-1904. Clark WH, Reimer RR, Greene M. Origin of familial malignant melanomas from heritable melanocytic lesions. Arch Dermatol 1978; 114: 732-738. Newton JA, Bataille V, Griffiths K, et al. How common is the atypical mole syndrome phenotype in apparently sporadic melanoma? J Am Acad Dermatol 1993; 29: 989-996. Kelly JW, Rivers JK, MacLennan R. Sunlight: a major factor associated with the development of melanocytic nevi in Australian school children. J Am Acad Dermatol 1994; 30: 40-48. Rivers JK, Maclennan R, Kelly JW, et al. The Eastern Australian childhood nevus study: prevalence of atypical nevi, congenital nevus-like nevi, and other pigmented lesions. J Am Acad Dermatol 1995; 32: 957-963. Marks R, Dorevitch AP, Mason G. Do all melanomas come from "moles"? A study of the histological association between melanocytic naevi and melanoma. Australas J Dermatol 1990; 31: 77-80. Sagebiel RW. Melanocytic nevi in histologic association with primary cutaneous melanoma of superficial spreading and nodular types: Effect of tumour thickness. J Invest Dermatol 1993; 100 Suppl: 322S-325S. Skender-Kalnenas TM, English DR, Heenan PJ. Benign melanocytic lesions: risk markers or precursors of cutaneous melanoma? J Am Acad Dermatol 1995; 33: 1000-1007. (Received 10 Dec 1996, accepted 10 Jun 1997) Authors' details Victorian Melanoma Service, Alfred Hospital, Melbourne, VIC. John W Kelly, MD BS, FACD, Head; Head of Dermatology Unit, Alfred Hospital; Clinical Associate Professor, Monash University Department of Medicine. Dermatology Unit, Alfred Hospital, Melbourne, VIC. Josephine M Yeatman, MB BS, GradDipEpi, Registrar. Cheryl Regalia, Medical student, University of California at San Diego; now MD. Dorevitch Laboratories, Melbourne Grahame Mason, MB BS, FRCPA, Pathologist. Department of Photography, Northern Territory University, Darwin, NT. Amanda P Henham, BAppSci(Photog), SRN, Lecturer. Reprints: Dr J W Kelly, Victorian Melanoma Service, Alfred Hospital, Commercial Road, Prahran, VIC 3181. ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

John W Kelly · Josephine M Yeatman · Cheryl Regalia · Grahame Mason · Amanda P Henham

Antibiotic use in the Australian community, 1990-1995 Peter McManus, M Leigh Hammond, Susan D Whicker, John G Primrose, Andrea Mant and Steven R Fairall For editorial comment see Turnidge Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - International comparisons of antibiotic usage - Types of antibiotics used in Australia and indications - Discussion - Acknowledgement - References - Authors' details Make a comment - - ©MJA1997 Abstract Objective: To determine the pattern of antibiotic use in the Australian community, 1990-1995, and compare it with the pattern in other developed countries. Design: Survey of data from the national database on drugs dispensed in Australia (1990-1995), an international database on retail drug sales (1985-1994), and Australian prescriber surveys (1994, 1995). Main outcome measures: National and international retail sales of oral antibiotics (defined daily doses [DDDs]/1000 population/day) and antibiotic prescriptions dispensed through community pharmacies by drug type; antibiotic prescribing profiles for common conditions. Results: Antibiotic use in Australia remained steady between 1990 and 1995, with an estimated 24.7 DDDs/1000 population/day dispensed through community pharmacies in 1990 and 24.8 DDDs/1000 population/day in 1995. Amoxycillin, although declining in use, remained the most dispensed antibiotic. Compared with the other countries surveyed, Australia had the highest percentage use of tetracyclines, such as doxycycline, and the lowest percentage use of fluoroquinolones. Use of trimethoprim-sulfamethoxazole and flucloxacillin declined in Australia. In new cases of upper respiratory tract infection or pharyngitis, an antibiotic prescription was recorded for 57% of urban patient encounters and 73% of rural patient encounters. Conclusions: Antibiotic use in Australia is high, as in many other developed countries, but did not increase between 1990 and 1995. The overall profile of antibiotic use in Australia by drug class was similar to that in the United Kingdom. Antibiotics were still commonly prescribed for upper respiratory tract infection (which is usually viral), more commonly by rural than by urban general practitioners. MJA 1997; 167: 124-127 Introduction Patterns of antibiotic prescribing in Australia between 1987 and 1989 were reported previously by the Drug Utilization Sub-Committee (DUSC) of the Pharmaceutical Benefits Advisory Committee, Department of Health and Family Services.1 At the time, the Sub-Committee expressed concern over evidence of "inappropriate and unnecessarily expensive" practice, which was "directed too heavily towards the use of broad spectrum agents and newer more expensive drugs".1 To update these data, DUSC convened a working group in 1995, comprising representatives of DUSC, the Australian Pharmaceutical Manufacturers Association and the Therapeutics Resource and Educational Network for Doctors (TREND) project of the Royal Australian College of General Practitioners. This group reviewed Australian and international data on antibiotic sales and dispensing to determine patterns of antibiotic use in Australia between 1990 and 1995, and to compare these with patterns in similar developed countries. To understand trends in drug use, the group also analysed prescriber surveys of the indications for antibiotic use. Methods Data were derived from four sources: Prescription dispensing data: These were obtained from the database maintained by the DUSC secretariat which monitors dispensing of prescription medicines through community pharmacies in Australia. These data include dispensing to some private hospitals, but not public hospitals. The database contains information on all subsidised prescriptions processed by the Health Insurance Commission, together with an estimate of non-subsidised prescriptions from an ongoing survey of a sample of about 250 community pharmacies.2 Measurement units are either prescription volumes or number of defined daily doses (DDDs)/1000 population/day. The DDD is based on the assumed average daily dose of the drug when used for its main indication by adults. It is the unit approved by the World Health Organization for drug use studies and allows for comparisons independent of differences in price, preparation and quantity per prescription.3 Sales data: Data on sales of oral antibiotics to retail and hospital markets in a number of countries were obtained from Intercontinental Medical Statistics (IMS), Melbourne. This is a commercial market research organisation which collects sales data and surveys general practitioner (GP) prescribing in 33 countries.4 Data were retrieved as unit sales by form and strength and drug class and then converted to DDDs/1000 population/day. Prescriber survey: Diagnoses for which patients were prescribed anti biotics and patient ages were obtained from the Australian Medical Index (AMI), the survey of GP prescribing conducted by IMS. This uses a sample of 420 GPs stratified in line with the total Australian GP population by metropolitan/country location, age, year of graduation, and practice size (patient numbers). These GPs record all patient encounters over seven consecutive days in each quarterly survey period. The data are then projected to obtain quarterly estimates of prescribing patterns by diagnosis and by patient age and sex for the Australian GP population. At the end of a four-quarter cycle, GPs are invited to continue participating. About half agree, and the remainder are replaced by new recruits. As GPs start in various quarters of the year, there is continual turnover; GPs are not usually kept in the survey for more than two years. TREND project: Use of antibiotics for management of upper respiratory tract infection (URTI)/pharyngitis and influenza was examined using the database of 33 203 doctor-patient encounters recorded in August and September 1994 by the TREND project. This project was part of the development of a new practice assessment in therapeutics option within the RACGP Quality Assurance and Continuing Education Program. Participating GPs recorded prospectively their drug and non-drug management, including lifestyle advice, investigations and referrals, for 110 consecutive patient encounters of all types (including surgery and telephone consultations, home, hospital and nursing home visits). The GP sample was drawn from two urban and two rural areas in NSW which were selected randomly from all NSW Divisions of General Practice, after matching within urban (16 Divisions) and rural (11 Divisions) strata. Matching variables were the index of relative socioeconomic disadvantage (from the 1991 Census5 ) and GP-to-population ratios (from the Medicare claims database as at the end of June 1993) (Gordon Calcino, Acting Director, Technical Support Section of the General Practice Branch, Department of Health and Family Services, personal communication). The rural areas included both major and outlying towns, but not remote rural areas. All GPs from the four areas were eligible for the survey, based on a list provided by the General Practice Branch from the Medicare claims database. Of the 783 GPs approached, 303 (38.7%) completed the practice assessment in 1994. Participants had a similar sex distribution to the 1994 NSW GP population, but a somewhat younger average age.6 Results Between 1990 and 1995, there was little change in the level of antibiotics dispensed through Australian community pharmacies, with an estimated 24.7 DDDs/1000 population/day dispensed in 1990 and 24.8 DDDs/1000 population/day in 1995. Pharmaceutical industry sales data of 25.2 DDDs/1000 population/day in 1989 and 24.8 DDDs/ 1000 population/day in 1994 (0.3% fall on compound annual growth rate) confirm this stability in overall use. International comparisons of antibiotic usage Retail sales of oral antibiotics in Australia and seven major developed countries in 1985, 1989 and 1994 are compared in Figure 1. Like most developed countries, Australia had a high use of oral antibiotics. In 1994 retail sales in Australia were second to those in France and followed closely by those in the United States. However, between 1989 and 1994 sales in Australia did not show the compound annual growth seen in all the other countries except Canada -- France (up 2.8%), United States (up 2.3%), Italy (up 2.9%), West Germany (up 4.4%) and the United Kingdom (up 3%). Sales of oral antibiotics to hospitals in 1994 and the percentage this represented of the total market are shown in Box 1 (above). The percentage was similar in Australia, Canada and the UK (7%, 9% and 11%, respectively), lowest in the US (5%) and highest in West Germany (38%). Figure 2 shows the percentage split of the oral antibiotic market by drug class in 1994. Australia had the highest percentage use of tetracyclines (25.5% of total oral antibiotics), but the lowest use of fluoroquinolones (2.2%) and mid range use of penicillins -- both narrow spectrum (7.1%) and broad spectrum (35%). The overall profile of antibiotic use in Australia was similar to that in the UK. Types of antibiotics used in Australia and indications The top 10 antibiotics, on prescription volume, dispensed through Australian community pharmacies in 1990 and 1995 are shown in Box 2. Amoxycillin was the most-dispensed antibiotic in 1990 and, although declining in use, remained in this position in 1995. Dispensing of doxycycline and erythro mycin also declined, while that of amoxycillin-clavulanate increased. Cefaclor and roxithromycin were new additions to the top 10 dispensed antibiotics in 1995. Converting prescription volume to DDDs/1000 population/day altered the relative ranking of some drugs. For example, drugs in the tetracycline group, which have increased maximum quantities available for treatment of severe acne, rose in rank (1990). In contrast, cefaclor, which has a high DDD (1.5g) by Australian standards, fell from third to seventh position (1995). Box 2 also shows antibiotic prescribing profiles for various indications in 1995. For sinusitis, the most prescribed antibiotics were doxycycline (20.7%), amoxycillin-clavulanate (18.1%) and cefaclor (15.1%). For bronchitis, the most prescribed antibiotic was amoxycillin (18.1%), followed closely by roxithromycin (16.5%) and cefaclor (15.2%). In urinary tract infections, trimethoprim-sulfamethoxazole (28.5%) was most commonly prescribed, followed by cephalexin (18.9%) and amoxycillin-clavulanate (17.2%). Antibiotic prescribing for upper respiratory tract infection (URTI)/pharyngitis and influenza was examined in the TREND sample of GPs from the August-September 1994 audit; 11.6% of encounters were for URTI/pharyn gitis and 1.2% for influenza. For new cases of URTI/pharyngitis, an antibiotic prescription was recorded for 57% of urban patient encounters and for 73% of rural patient encounters. Corresponding figures for antibiotic prescribing in new cases of influenza without pneumonia were 30% of urban and 62% of rural patient encounters. The TREND project did not evaluate whether the prescription was to be filled only under certain conditions (e.g., if symptoms had not improved after a certain interval), but some GPs commented that this was their advice to patients. For symptomatic management, the most common choices were decongestants and analgesics. AMI survey data showed that overall antibiotic usage by age broadly followed the proportional representation of particular age groups in the community, with the exception of the 0-19 years age group. This group received 36.9% of antibiotic prescriptions, but made up only 28.7% of the population. However, for specific conditions the age patterns varied. For example, the TREND project showed that an antibiotic was less often prescribed for children aged 0-5 years with URTI (34.1%) than for adults aged 50 years and over (62.5%). Figure 3 shows quarterly fluctuations in dispensing of oral antibiotics compared with oral β-blockers -- a drug type used on an ongoing basis. Antibiotic dispensing was markedly seasonal, with higher levels in the winter quarters (April to June and July to September), while dispensing of oral β-blockers was low at the beginning of the year and high at the end. The second pattern was typical of "safety net" fluctuations.7 These result from Pharmaceutical Benefits Scheme (PBS) provisions that provide drugs free, or at lower cost, to the patient if they are dispensed after the patient has incurred a set expenditure on PBS items in a calendar year (the "safety net" threshold). Consequently, patients tend to fill repeat prescriptions towards the end of the safety net year, after they reach this threshold. Changes to reduce these fluctuations were introduced in November 1994. Discussion This report is a unique attempt by diverse groups to combine their data sources to give a more complete picture of antibiotic use in Australia than has previously been available. The comparison between seven major developed countries showed that community use of antibiotics in Australia between 1985 and 1994 was high -- second only to France, with the US a close third -- but did not increase during the 1990s, as it did in most of the other countries. In 1994, hospitals accounted for only 7% of retail sales of oral antibiotics in Australia, similar to the percentages seen in Canada and the UK. Similarly, a survey of cardiovascular drug use in Australian public hospitals found that hospital use accounted for less than 10% of the total use of all cardiovascular drug groups.8 The highest percentage of antibiotic use in the hospital sector was found in West Germany, where capping of GP prescribing budgets was introduced in 1993. It has been argued that these prescribing budgets for reimbursable drugs have increased hospital budgets.9 Australia had the highest percentage use of tetracyclines among the seven major developed countries, possibly because of its use in managing acne. In contrast, Australia had the lowest percentage use of fluoroquinolones, most likely because of PBS prescribing restrictions ("authority required"). Amoxycillin remains the antibiotic most dispensed through community pharmacies in Australia, but its use declined between 1990 and 1995, undoubtedly because of transfer prescribing to amoxycillin-clavulanate or other antibiotics. Concerns over an increased risk of severe adverse reactions with trimethoprim-sulfamethoxazole in the elderly10 and of hepatotoxicity with flucloxacillin11 were probably respon sible for the marked fall in use of these drugs and the rise in use of cephalexin, a substitute for flucloxacillin in skin and soft-tissue infections pending the availability of dicloxacillin (PBS listed in 1997).12 The winter increase in dispensing of oral antibiotics in Australia contrasted with the "safety net" fluctuations of the oral β-blockers, which are used on an ongoing basis, and probably reflected treatment of respiratory tract infections. In fact, antibiotics were prescribed for 57%-73% of new cases of URTI. This contrasts with peer consensus recommendations on the use of antimicrobial drugs in medical practice. The Antibiotic guidelines13 state that for URTI "the cause is almost invariably viral" and "antibiotics are not indicated". Furthermore, TREND data show that rural GPs are more likely to prescribe antibiotics for URTI than urban GPs. The difference may reflect rural GPs' concern for the greater patient travel and inconvenience in visiting the doctor in the country, with prescriptions being supplied for use if symptoms fail to resolve after a period of time. However, it may also reflect differences in access to continuing education and in industry promotion between rural and urban GPs. The data also provide insight into GPs' perceptions of antibiotic resistance among bacteria. For sinusitis, the most prescribed antibiotics were doxycycline, amoxycillin-clavulanate and cefaclor, which are recommended if resistance to amoxycillin issuspected or proven.13 For bronchitis, amoxycillin was most prescribed, followed closely by roxithro mycin and cefaclor, which are recommended if a b -lactamase producing organism is isolated or if the clinical response is slow. Our results indicate a strong perception among doctors that resistant organisms are a significant clinical problem, at least for sinusitis and bronchitis. Reasons for this are unclear and deserve investigation; they may include previous clinical experience of slow resolution of these infections with standard therapy, or awareness of the prevalence of resistant bacteria in the local community. A corollary to the study of antibiotic use is an examination of the patterns of antibiotic resistance in bacteria, which may be associated with levels of use of particular antibiotics and with total use. This issue is currently being explored in Australia by the Australian Group on Antimicrobial Resistance and by the National Antimicrobial Resistance Surveillance Program and internationally by the Alexander Project. Acknowledgement Members of the Antibiotic Working Group, which helped prepare these data were: Drug Utilization Sub-Committee: Julie Lindner, Peter McManus, John Marley, Andrew Parkes and John Primrose. Australian Pharmaceutical Manufacturers Association and pharmaceutical industry: Lee Ausburn, Roger Fraser, Steven Fairall, Mendel Grobler, Leigh Hammond, Peter Kofler and Jenny Winter. Royal Australian College of General Practitioners Therapeutics Resource and Educational Network for Doctors (TREND): Andrea Mant and Sue Whicker. The TREND project was funded by a grant from the Pharmaceutical Education Program of the Department of Health and Family Services. References Birkett DJ, Mitchell AS, Godeck A, et al. Profiles of antibacterial drug use in Australia and trends from 1987 to 1989. A report from the Drug Utilization Subcommittee of the Pharmaceutical Benefits Advisory Committee. Med J Aust 1991; 155: 410-415. Edmonds DJ, Dumbrell DM, Primrose JG, et al. Development of an Australian drug utilisation database. A report from the Drug Utilization Subcommittee of the Pharmaceutical Benefits Advisory Committee. PharmacoEconomics 1993; 3: 427-432. Nordic Council on Medicines. Nordic Statistics on Medicines 1990-1992. NLN publication number 34. Uppsala, Sweden: NLN, 1993. Hurley SF, McNeil JJ, Berbatis CG. Sources of Australian pharmacoepidemiology data. Community Health Studies 1988; 12: 82-96. Australian Bureau of Statistics. Index of relative socioeconomic disadvantage. Canberra: ABS, 1993. (Catalogue no 1356.0.) Australian Institute of Health and Welfare. Medical labour force 1992-93. National Health Labour Force Bulletin No. 3. Canberra: Australian Institute of Health and Welfare, Jul 1995. McManus P. Drug utilisation [letter]. Med J Aust 1993; 158: 724. Doecke C, Harvey R, Havas L. Cardiovascular drug use in Australian hospitals 1990. Summary report of a survey conducted by the Society of Hospital Pharmacists of Australia and the Australian Institute of Health for the Commonwealth Department of Community Services and Health. Canberra: the Department, Oct 1991. German drug caps boost hospital costs SCRIP 1993; 1877: 4. Adverse Drug Reactions Advisory Committee. Trimethoprim-sulphamethoxazole warning on elderly. Aust Adverse Drug React Bull 1990 Fed. Fairley CK, McNeil JJ, Desmond P, et al. Risk factors for development of flucloxacillin associated jaundice. BMJ 1993; 306: 233-235. Turnidge J. What to use instead of flucloxacillin [editorial]. Aust Prescriber 1995; 18: 54-55. Victorian Medical Postgraduate Foundation. Antibiotic guidelines 1996/97. 9th edition. Melbourne: The Foundation, 1996. (Received 19 Dec 1996, accepted 29 Apr 1997) Authors' details Department of Health and Family Services, Canberra, ACT. Peter McManus, BPharm, MMedSc, Secretariat, Drug Utilization Sub-Committee; John G Primrose, FRACR, Medical Advisor, Health Benefits Division. SmithKline Beecham (Aust), Melbourne, VIC. M Leigh Hammond, FRCPA, Medical Director. Therapeutics Unit, Royal Australian College of General Practitioners, Sydney, NSW. Susan D Whicker, PhD, Scientific Director. Drug and Alcohol Program, Eastern Sydney Area Health Service, Sydney, NSW. Andrea Mant, MD, FRACGP, Clinical Director. GPS Business Unit, Eli Lilly, Sydney, NSW. Steven R Fairall, BScAg, Associate Director. Reprints will not be available from the authors. Correspondence: Mr P McManus, Drug Utilization Sub-Committee, Department of Health and Family Services, GPO Box 9848, Canberra, ACT 2601. E-mail: peter.mcmanus @ health.gov.au Make a comment - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia. We appreciate your comments.

Peter McManus · John G Primrose · Andrea Mant · Steven R Fairall

The public health impact of dog attacks in a major Australian city Peter G Thompson Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - References - Authors' details - ©MJA1997 Abstract Objective: To examine the impact of dog attacks by determining the incidence and risk factors for dog attacks. Design: Injury surveillance data on dog attacks for a major metropolitan hospital were converted to incidence rates using 1991 census figures for the hospital catchment area and combined with data on community attitudes and experiences derived from a large community survey. Setting: Queen Elizabeth Hospital (tertiary referral hospital), Adelaide, South Australia, January 1990 to July 1993. Participants: 356 victims of dog attacks who presented to the emergency department and 3093 respondents to the 1992 South Australian Health Omnibus Survey. Main outcome measures: Rates of dog attack by age and sex of the victim, hospital presentation and admission; differences in the representation of various dog breeds in attacks. Results: About 6500 people are injured in Adelaide each year as a result of dog attacks and about 810 seek hospital treatment (7.3 per 10 000 people per year). Children aged 0-4 years were attacked and required hospital treatment twice as often as adults aged 21-59 years, and men aged over 76 years twice as often as men aged 36-75 years. Males were more at risk of attack than females for all age groups. Hospital admission rates were five times higher for the elderly (95% confidence interval [CI], 2.3%-10.2%) and seven times higher for children 12 years and under (95% CI, 3.4%-15.1%) compared with people aged 13-59 years; 90% of children were admitted because of head and facial bites. The risk of attack from german shepherds, bull terriers, blue/red heelers, dobermans and rottweilers was four to five times higher than for other common breeds. Conclusions: The public health implications of dog attacks are significant and there needs to be increased awareness of the risks to young children. Potential interventions to reduce the incidence of dog attacks vary from strict controls on high-risk breeds to mandatory leashing to a "user pays" liability insurance proposal. MJA 1997; 167: 129-132 Introduction Dog attacks are a major cause of human injury in Australia. In 1991, it was estimated that there could be up to 30 000 people presenting to hospital annually as the result of dog attacks in Australia.1 Injury records from the Women's and Children's Hospital in South Australia show that dog attacks are the fourth most common reason for children being taken to hospital, after accidents from playground equipment, bicycles and motor vehicles.2 Studies from other States3,4 also report a high level of childhood injuries related to dog attacks, and a recent South Australian report5 confirmed that dogs were a significant cause of injury at all ages, including the elderly. In the United States, there has been a 37% increase since 1986 in dog bites that required medical attention, and dog attacks eclipse measles, mumps and whooping cough combined as a health threat to American children.6 To determine the impact of dog attacks and identify possible interventions to reduce their frequency, we examined surveillance data from a major metropolitan hospital in Adelaide and data from a large community survey. We report the rates of hospital treatment and admission for dog attacks, the severity of injuries, the groups most at risk of attack, community concern about dog attacks and a comparison of the relative risk between dog breeds. Methods Two data sources were used in this study: the South Australian Health Commission's Injury Surveillance System, and the 1992 South Australian Health Omnibus Survey. In both data sources, a "dog attack" was defined as an intentional bite by the dog, or direct aggression causing injury to the victim. 1991 Census population statistics were also used to determine the age- and sex-specific rates of dog attack, as well as the age-specific rates of admission to hospital resulting from dog attacks. Ethics approval was provided by the University of Adelaide. Injury Surveillance System The South Australian Health Commission's Injury Surveillance System automatically receives information from victims who present to selected metropolitan public hospitals for treatment. For the purposes of this study, it provided information about all victims of dog attacks (e.g., age and sex of victim, type of injury, location and description of incident and treatment) who presented to Queen Elizabeth Hospital in Adelaide between January 1990 and July 1993. This system, which includes all age groups, has the advantage of documenting the information at the time of treatment (in the hospital), which reduces the possibility of subsequent recall bias. Queen Elizabeth Hospital was chosen for this study because it has a well-defined catchment area with natural geographic boundaries on two sides. The other boundaries were determined by selecting the midpoint between adjacent public hospitals. Approximately 13% of the victims of dog attacks in the Adelaide metropolitan area who required hospital treatment between January 1990 and July 1993 presented to Queen Elizabeth Hospital. From a total of 356 attacks, the mean number by age and sex per year was calculated. The Injury Surveillance System provided the breed of dog (when it was known). We were confident that the breed names were accurate because in at least half of the attacks the victim was the dog's owner, a family member or a person who knew the dog well and the breeds named were common and easily recognised. Breeds that were unknown could have been a source of bias if their breed distribution was different. However, a comparison of victims who named the dog breed with those who did not failed to show any appreciable differences with regard to age, sex, dog ownership, body part injured and injury severity. The breed distribution of known breeds also largely agreed with other investigations.4,7-10 An indicator of the health impact of the injury on the person's life was whether the victim was admitted to hospital after initial examination in the emergency department. Those who were admitted were expressed as a proportion of the total number of people presenting to the emergency department. As data for all admissions came from the same hospital, the selection criteria for admission were likely to be consistent. The distribution of injury by body part was also examined. Health Omnibus Survey The 1992 South Australian Health Omnibus Survey11 contains information obtained from interviews with 3093 randomly selected persons in Adelaide in 1992.11 The annual Omnibus Survey is a population health survey that provides a large representative sample of the attitudes towards health issues and experiences of people aged over 15 years. For our investigation, 13 questions concerning dog attacks were incorporated into the Omnibus Survey, including: Does anyone in this household own a dog? What is the breed of the dog? Have you been attacked by a dog in the past three years? Whose dog was it? Where did the attack occur? To what extent do you fear being attacked or threatened by a dog? Respondents were also asked about injuries sustained and treatment received. Therefore, the Omnibus Survey provided data not only about victims of dog attacks who presented to hospital, but also data on victims of dog attacks who may have consulted a general practitioner as well as those who may not have been injured at all. The Omnibus Survey also provided information on the distribution of the dog population by breed. The frequency of breeds involved in attacks was converted to a representation ratio to compare the relative risks between breeds. The ratio was calculated by dividing the percentage of attacks per breed by the percentage of the total dog population represented by the same breed. Representation ratios allow confirmation of whether certain breeds of dog attack more frequently because they are more commonly chosen as pets (e.g., german shepherds may cause 25% of all attacks simply because they comprise 25% of the dog population). Population statistics from the Omnibus Survey as well as the 1991 Census were used to examine the demographics of the catchment area of Queen Elizabeth Hospital in comparison with metropolitan Adelaide. From an examination of the data on age, ethnicity and socioeconomic status, it was concluded that the catchment was representative of metropolitan Adelaide. Statistical analysis Ninety-five per cent confidence intervals [CIs] for admission rates were attributed to Lilienfeld and Lilienfeld,12 and 95% CIs for admission rate relative risks attributed to Rothman's analysis of crude data.13 Results Frequency of dog attacks: presentation to hospital Box 1 shows the age- and sex-specific rates of dog attack calculated from victims who presented to the emergency department of Queen Elizabeth Hospital from January 1990 to July 1993. The 356 dog attacks for this period equate to 7.3 attacks per 10 000 people per year requiring hospital treatment. The rate of dog attack for men over the age of 76 was nearly double the rate for men aged 36 to 75, but this was not statistically significant, possibly because of the small sample size of older men. Notably, the rate for children aged 0 to 4 years was twice that for adults aged 21 to 59 years. This rate was likely to be conservative because some children in the catchment area of Queen Elizabeth Hospital may have been taken directly to the Adelaide Children's Hospital. There was also a marked difference between the rates for men and women. Men had, on average, a 50% higher risk of attack at all ages ( Figure 1). Frequency of dog attacks: community survey Of the 3093 respondents to the Omnibus Survey, one in 20 reported that they had been attacked by a dog at least once in the past three years, and a third had been attacked more than once in the past three years. More than half (51%) reported that they had been attacked in a street or public place. Of the 88 people who reported in the Omnibus Survey that they had been injured by dogs and had required treatment, 35 people (40%) had consulted a doctor and 11 people (12.5%) had sought hospital treatment per year. The Omnibus Survey reported that 37.2% of households in metropolitan Adelaide owned at least one dog. The 1992 Dog Control Review Report estimated that there were about 190 000 dogs in metropolitan Adelaide.14 Admission to hospital Box 2 (above) shows the number of victims of dog attacks who were admitted to Queen Elizabeth Hospital between January 1990 and July 1993. The rates of admission to hospital, as an indicator of the health impact of dog attack, were five times higher for elderly people (95% CI, 2.3-10.2) and seven times higher for children (95% CI, 3.4-15.1) than for people aged 13-59 years. Nearly two-thirds (66%) of children aged up to 12 years received head and facial bites ( Figure 2); these injuries were responsible for 90% of admissions in this age group ( Figure 3). Relative risk of dog attack, by breed Box 3 (below) shows the proportion of dog attacks by various breeds, the representation of particular breeds in the total dog population, and the relative risk of attack by those breeds (representation ratio). The Injury Surveillance System provided the breed of dog in 43% of attacks (154). It can be seen that the first five breeds were responsible for 73% of all hospital-treated attacks, yet they represented only 31% of the dog population. The relative risk of attack by a german shepherd was about five times greater than a collie (2.5/0.5 = 5). Bull terriers, red/blue heelers and rottweilers presented a four-times-higher risk. The relative risk of attack by a doberman was even higher. It is possible that more dangerous dogs existed (e.g., the prohibited American pit bull terrier), but they did not feature in the Injury Surveillance System data because they comprised a small proportion of the dog population. Fear of dog attacks Half of the respondents to the Omnibus Survey felt threatened or feared being attacked by dogs (95% CI, 48.4%- 51.9%). Of those who were afraid, 28.4% said their concern was minor in that it did not affect their behaviour, 18.7% felt moderate concern which had had an effect on their behaviour (such as planning safer routes away from known dogs), and the remaining 3.1% expressed major concern which had had more dire consequences (such as deciding not to leave the house to go shopping). Incidence of dog attacks The total number of attacks represented a rate of 2.85% per year, which corresponds to about 29 000 attacks in metropolitan Adelaide each year, based on the 1991 Census population of 1 023 278. The total number of people injured and requiring treatment represented a rate of 0.63% per year, which corresponds to about 6500 people being injured and requiring treatment following dog attacks in Adelaide each year, with 2600 persons consulting a doctor and 810 seeking treatment at a hospital. If the overall rate of presentation to Queen Elizabeth Hospital following a dog attack (i.e., 7.3 per 10 000 people per year) is applied to the population of Adelaide, it corresponds to 750 persons presenting to hospital each year. This figure is close to the rate of 810 reported in the Omnibus Survey. If Adelaide is considered similar to most other Australian metropolitan areas, it could be expected that around 100 000 Australians will be injured and require treatment each year as a result of dog attack and that about 13 000 will seek treatment at a hospital. Discussion In this study, three-quarters of all hospital-treated dog attacks were caused by just five of the 160 or so available breeds. Limiting the availability of these breeds would be one way of reducing injury. Alternatively, ownership could be restricted to certified owners who accept responsibility to place specific controls on these breeds. These controls include obedience training and dog behaviour assessment, ensuring that the dog is on a leash at all times in public, the home property is securely fenced and warning signs have been erected for visitors. Owners should also be encouraged to join dog clubs to raise awareness of the responsibilities involved in owning a dog. More than half the attacks reported in this study occurred in a street or public place by loose uncontrolled dogs. It is reasonable to assume that if the dogs had been restrained these attacks would not have occurred. The Australian Capital Territory, the Brisbane City Council, and a number of Victorian councils have adopted the strategy of requiring all dogs to be on a leash at all times in public. Councils in those States that still consider dogs need only be under the verbal control of their master in public places should consider this safer option. Brisbane City Council also requires mandatory fencing to contain dogs within their owner's property. Data from the Injury Surveillance System clearly show that dogs and very young children frequently do not mix.1 Parents of young children would be wise to postpone purchase of a dog until their children are older, preferably more than five years of age. A nationwide publicity campaign is recommended to alert parents to the dangers, especially in view of the high level of attacks to the head and face of children found in this study. Another option to reduce dog attacks could be to adopt a "user pays" element into dog ownership by introducing a third party insurance scheme. The issue of a registration permit could be conditional on the presentation of a suitable insurance agreement. In 1993, a South Australian court awarded $380 000 to a garbage collector for injuries sustained when attacked by an unrestrained dog -- the dog's owners were found responsible for the damages.15 For low-risk breeds, it is anticipated that there would be no additional premium to standard home insurance cover, but for high-risk breeds an increased premium would be likely. The premium would ultimately be determined by the extent of the claims relevant to each particular breed (i.e., the performance of the insured determines the cost). The paying of an additional premium would have the effect of deterring "spur-of-the-moment" buyers by encouraging them to think more carefully when choosing a breed and perhaps buy a lower-risk breed. Another benefit would result from insurance companies insisting on better ownership practices for particular breeds (as outlined at the beginning of the Discussion) before issuing policies. The rates of dog attack in Adelaide were projected to the nation as a whole because most Australians live in metropolitan areas and large regional centres (similar to Adelaide) and it was therefore considered that dog attacks were a widespread public health problem. The finding that half of the population surveyed were concerned about being attacked by dogs indicates that strengthening of dog-control policies will be more acceptable to the community than previously thought. In view of rising community concern and increasing media reports on dog attacks, owners must take more responsibility and put in place measures to reduce the incidence of dog attacks. References South Australian Health Commission. Dog attacks. Inj Surveill Monthly Bull January 1991; 29: 1-2. Williams N. Women's and Children's Hospital. The perils of being a kid . The Advertiser (Adelaide) August 1995. Ashby K. Dog bites. Victorian Injury Surveillance System. Hazard 1996; 26: 7-13. Podberscer AL, Blackshaw JK, Nixon JN. The incidence of dog attack in children treated at a city hospital. Aust Vet J 1990; 67: 79-80. Langley A, Dantalis N, Edwards-Bert P. Environmental health in the home. Adelaide: South Australian Health Commission, 1996: 10-32. Wulf S. Man's best friend? Time 1997; June 23: 68. Greenhalgh C, Cockington R, Raftos I. An epidemiological survey of dog bites presenting to the emergency department of a children's hospital . J Paediatr Child Health 1991; 27: 171-174. Thomas PR, Buntine JA. Man's best friend? A review of the Austin Hospital's experience with dog bites. Med J Aust 1987; 147: 536-540. Langley J. The incidence of dog bites in New Zealand. Injury Prevention Research Unit, Preventive and Social Medicine. N Z Med J 1992; 105: 33-35. Avner JR, Baker MD. Dog bites in urban children. Pediatrics 1991; 88: 55-57. Harrison R. 1992 Health Omnibus Survey -- A research report. Adelaide: Harrison Market Research Pty Ltd; 1993: 11-21. Lilienfeld AM, Lilienfeld DE. Foundations of epidemiology. 2nd ed. New York: Oxford University Press, 1980: 336-337. Rothman KJ. Modern epidemiology. Boston/Toronto: Little, Brown and Company, 1986: 155-175. KJ McCann. Dog Control Review Report. Adelaide: South Australian Department of Environment and Planning, 1992. Revalk J. Dog scare garbo gets $380 000 for injuries. South Australian Advertiser March 1993. (Received 20 Aug 1996; accepted 26 May 1997) Authors' details Injury Surveillance and Control Unit, South Australian Health Commission, Adelaide, SA. Peter G Thompson, MPH, Injury Epidemiologist. Reprints will not be available from the author. Correspondence: Mr P G Thompson, Public and Environmental Health Service, South Australian Health Commission, PO Box 6, Rundle Mall, SA 5000. E-mail: somers.ronald@health.sa.gov.au ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Peter G Thompson

Burden and outcomes of hospitalisation for congestive heart failure Fiona M Blyth, Ross Lazarus, David Ross, Michael Price, Gary Cheuk and Stephen R Leeder For editorial comment see Krum Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Authors' details - ©MJA1997 Abstract Objective: To describe the hospital burden and health outcomes associated with admission for congestive heart failure (CHF). Design and setting: Descriptive follow-up study in a tertiary-level metropolitan teaching hospital. Patients: Acute adult inpatients with a clinical diagnosis of CHF for more than 24 hours admitted to Westmead Hospital, Sydney, during the four months from September 1993 to January 1994. At baseline, 122 patients were assessed; 88 patients were assessed at four-month follow-up. Interventions: Usual clinical care. Main outcome measures: Length of stay; hospital bed-days; readmissions; mortality; health related quality of life (SF-36); patient knowledge. Results: The average age of subjects was 73.4 years. Many were using informal domiciliary care before admission. Mean length of stay for the baseline admission was 13.8 days, accounting for 7.6% of hospital separations and 1683 hospital bed-days, or 4.2% of bed-days for all inpatients aged 65 years and over. Fifteen patients were readmitted for CHF during the following four months, with a total of 26 CHF-related admissions. Twenty-one patients (17.2%) died during the course of the study. Quality of life at baseline was poor compared with population normative data, with a slight improvement among survivors at four-month follow-up. Patient knowledge of CHF was poor in a subsample survey ( n = 24). Conclusions: CHF represents a significant burden to patients (through morbidity and mortality), their carers (through provision of daily care), and hospitals (through multiple admissions for acute decompensation). It is difficult to monitor the hospital burden of CHF using routine data sources. MJA 1997; 167: 67-70 Introduction Congestive heart failure (CHF) has been estimated to affect 3%-5% of those aged over 65 years, and 10% of those over 75 years.1 It is the fastest growing cardiovascular disorder in the United States,2 the only one increasing in incidence and prevalence,3 and the leading cause of hospital admission and readmission in Americans aged over 65 years.4 In 1990, CHF cost the US economy $US8 billion, and accounted for five million hospital bed-days.5,6 In Scotland, CHF hospital discharge rates have risen in a decade to be almost equal to those for myocardial infarction.7 In the United Kingdom, the National Health Service spends £360 million per year in diagnosis and management, on a par with spending on stroke or asthma. Most of this expenditure is on hospital admissions.8 As there is little information available on the outcomes of current hospital management of CHF patients,9,10 we describe the health outcomes of a cohort of patients hospitalised with CHF, and the impact of their hospitalisation on a health service. Methods All acute adult patients admitted to Westmead Hospital during four months (September 1993 to January 1994) with a clinical diagnosis of CHF, or who developed CHF of more than 24 hours' duration during an admission, were eligible for inclusion in the study. The diagnosis of CHF was made by medical staff on clinical grounds. Additional eligibility criteria were fluency in English and absence of significant cognitive impairment. Two cardiology-trained research nurses implemented an active daily case-finding strategy to overcome the difficulties encountered in identifying CHF patients from existing record systems. Diagnostic codes are generally not added to the patient's medical record until some time after discharge. Patients were identified by review of the computerised admissions log, medical record chart audit in the relevant ward areas, and consultation with medical staff. Potential subjects were assessed for their general condition and fluency in English and, if appropriate, screened for cognitive impairment by means of the Mini-Mental State examination.11 Informed consent was then sought. If patients were unable to participate fully, consent was sought to review their medical record and follow them up four months later to ascertain vital status. Baseline data were collected by interview, medical record review and self-administered questionnaires. Data were collected on demographic characteristics, domiciliary arrangements, current and past medical history, clinical severity of heart failure (according to the New York Heart Association [NYHA] criteria for grading functional incapacity of patients with cardiac disease), investigations, drug treatment, hospital resource use, formal and informal use of domiciliary care, and health-related quality of life (HRQOL) before admission (measured with the SF-36 [Medical Outcomes Study 36 Item Short Form Health Survey]).12 Patient knowledge about CHF was assessed by a short questionnaire in a subset of 24 consecutive patients. Four months after baseline admission, subjects were contacted by telephone to arrange follow-up by questionnaire. Data were sought on health status, HRQOL, current treatment, and domiciliary arrangements. The hospital's computer system was searched for any readmissions during the follow-up period. All analysis was performed using SAS version 6.08 for Windows.13 Two-sample t tests were used to assess the statistical significance of differences between groups, with adjustments made for multiple comparisons. SF-36 data were scored and subscales were calculated with the recommended scoring algorithm.12 Westmead Hospital Human Research Ethics Committee approved the study, and informed consent was obtained from all participating patients. Results There was no "gold standard" available for checking the accuracy and completeness of study case ascertainment methods. However, a list was assembled of all separations from Westmead Hospital during the study recruitment period with a principal diagnosis code for CHF (ICD-9 codes 428.0, 428.1, 428.9). These were then cross-checked against a list of study subjects. This list identified seven patients who were not identified by study case-finding methods. These were considered "missed" potential cases, but represented a small proportion of this group (4.3%). During the study recruitment period, 154 patients met the required clinical criteria and 122 (79%) consented to participate. Participation and follow-up are detailed in Box 1. Sample characteristics: Women made up 54.9% of the study participants. The mean age was 73.4 years (range, 24-97 years); women were older on average than men (76.8 compared with 69.4 years; P = 0.0001). Most patients had a history of established CHF; 35.2% were undergoing their first hospital admission for CHF. Only 1.8% of patients were NYHA grade I on baseline admission, 12.3% grade II, 64.4% grade III, and 17.5% grade IV (4% lacked data for NYHA classification). Thirty-eight patients had their ejection fraction measured at the baseline admission, with a mean value of 35% (range, 9%-74%). Ischaemic heart disease (58.2%) and hypertension (39.3%) were major aetiological factors in CHF. The cohort was cared for by cardiologists (n = 74; 60.7%), and geriatricians (n = 48; 39.3%). Admission diagnoses are shown in Box 2 (below). When admission diagnoses were compared with ICD-9 codings on the medical record, 39 (86.6%) of the 45 with heart-failure-specific admission diagnoses and 30 (78.9%) of the 38 with suggestive diagnoses had a CHF-related ICD-9 code (428, 428.0, 428.1, 428.9) in one of the first six ICD-9 coding positions. Preadmission characteristics: Data were available for 99 subjects: 88 lived in private accommodation, 50 reported needing regular help from family or friends with general housekeeping, and 23 reported needing help with supervision of medication. Length of stay: The study participants accounted for 7.6% of hospital separations (excluding day-only patients). The mean length of stay during the baseline admission was 13.8 days (SD = 12.1). Length of stay had a markedly skewed distribution (median, 10 days; range, 2-66 days). Overall, the sample accounted for 1683 bed-days during baseline admissions and 10.6% of hospital bed-days associated with the geriatricians and cardiologists who participated in the study. Of those patients aged 65 years and over admitted during the same period, the CHF cohort accounted for 4.2% of bed-days. Readmissions: During the follow-up period, there were 73 readmissions to Westmead Hospital from the study cohort, 26 due to a further episode of CHF in 15 patients. A total of 171 bed-days were used for CHF-related readmissions by the 14 patients for whom data were available. Deaths: Twenty-one patients died during the study (17.2%). Changes in domicile: Eight patients (8.1%) were discharged to a higher level of domiciliary care, suggesting a decline in independence and increased use of health and/or community services. Quality of life: Data on HRQOL before admission were obtained from 84 of the 85 subjects at baseline (Box 3). Mean SF-36 subscale scores for these subjects were generally low, particularly for subscales with physical health components. For each subscale there was a wide range of scores, indicating substantial variability in health-related quality of life before admission. Compared with Australian normative SF-36 data for men and women aged 65 years and over,14 the study cohort reported significantly lower mean HRQOL for all subscales. Follow-up SF-36 data were obtained for 58 subjects (Box 4). Patients with missing follow-up data had either died before follow-up (n = 15) or were too unwell to fill in the form (n = 6). In that sense, the SF-36 results at follow-up represent the "survivor" population within the study cohort. Mean follow-up subscale scores in survivors were somewhat higher compared with their baseline scores. The smallest improvements were in the subscales related to physical health. Improvements in the Social Function, Vitality and Mental Health subscales were statistically significant. Patient knowledge: The 24 patients who completed the questionnaire were similar to the CHF cohort in age, sex, length of stay, and type of treating specialist. Nineteen had been admitted to hospital previously for CHF. Only 11 knew that they had been diagnosed as having heart failure. Although 16 agreed that patients with heart failure would need to take medication permanently, six thought that CHF was unlikely to recur. Nineteen agreed that shortness of breath and 15 agreed that ankle swelling were important symptoms, but only four recognised that rapidly increasing weight was important. Discussion CHF has a significant impact on hospital services. The study cohort contributed significantly to adult bed-days attributable to participating clinicians. A substantial proportion (12.3%) of the cohort was readmitted with CHF within four months of their baseline admission, suggesting an annual readmission rate of around 36%. This compares with an annual readmission rate of nearly 20% in the SOLVD (Studies of Left Ventricular Dysfunction) registry study cohort, who were younger.10 CHF admissions show seasonal variations, with a winter peak that is probably associated with chest infection. Therefore, the impact of CHF on acute hospital services may be even greater at that time of year. The 48 subjects (39.3%) who were admitted under the care of geriatricians were, by hospital admission policy, those aged over 65 with serious comorbidity and/or likely to represent a placement problem after discharge. Many required substantial help with tasks essential for independent living, and most of this help was provided informally. This was clearly a group that would require increased resources with deteriorating health. HRQOL was generally poor in the study participants compared with normative data,14 probably reflecting the combined effects of disease severity and comorbidity. There was limited improvement between baseline and follow-up, particularly in the subscales related to physical health, perhaps indicating that at baseline the lower limits of some SF-36 subscales did not adequately reflect the subjects' condition (i.e., a "floor" effect was operating). The mean changes in scores over time were small, but underlying this was great variability between individuals. At the time of this study there were few educational resources for CHF patients. This is surprising, as CHF is a chronic condition with acute exacerbations that may be ameliorated by early recognition and intervention, and which requires compliance with medication. Some CHF patients may avoid hospital admission by timely intervention prompted by self-monitoring of signs and symptoms. Seventy-six subjects (62.3%) had a recorded history of acute deterioration lasting for more than 24 hours, suggesting a possible opportunity for early recognition and intervention. The patient knowledge survey was limited, but it demonstrated an apparent lack of understanding of key features of CHF. Recent acute illness could have contributed to this. That almost a quarter of the cohort required daily help with taking medications has implications for the targeting of educational interventions. For elderly patients experiencing readmissions for CHF, the risk of dying in the near future and the palliative nature of treatment are additional issues which may need to be explored. This study was constrained, for practical reasons, by reliance on a clinical diagnosis of CHF. In a larger study with more resources, verification of diagnosis and more detailed examination of diagnostic coding practices would be desirable, and would allow identification of subgroups of particular clinical interest. Diagnostic coding practices in routine record keeping do not facilitate monitoring of the public health impact of CHF. A hospital admission for CHF may be assigned a principal ICD-9 code which reflects the underlying cause of CHF, and secondary ICD-9 codes are sometimes used to identify a past medical history of CHF rather than a feature of the current admission. In this study, poor health represented a further barrier to study participation and monitoring outcomes. Most losses to follow-up resulted from death or worsening health. During the study 21 subjects (17.2%) died. This represents a poor survival rate, worse than for many malignancies of adulthood. Cause of death was not ascertained, but in the SOLVD registry cohort10 most deaths were due to progressive CHF. In addition, sudden death occurs in CHF patients at five times the rate in the general population of the same age.15 Chronic CHF represents a significant burden to patients (through morbidity and mortality), their carers (through provision of daily care), and the hospital system (through multiple admissions for acute decompensation). Acknowledgements We acknowledge the contribution of Moira Hewitt, RN, and Jeanette Bunn, RN, to the Westmead CHF Outcomes study, and study coinvestigator Dr Julia Lowe from the Newcastle Heart Failure Group. This study was funded by the NSW Health Department's Health Outcomes Program. References Failure to treat heart failure [editorial]. Lancet 1992; 330: 278-279. Mortality from congestive heart failure --United States, 1980-1990. MMWR Morb Mortal Wkly Rep 1994; 43: 77-81. Yamani M, Massie BM. Congestive heart failure: insights from epidemiology, implications for treatment. Mayo Clin Proc 1993; 68: 1214-1218. Gooding J, Jette AM. Hospital readmissions among the elderly. J Am Geriatr Soc 1985; 33: 595-601. National Centre for Health Statistics, Graves EJ. National Hospital Discharge Survey: Annual Summary, 1990. Vital Health Stat [13] 1992; 112: 28. Munoz E, Chalfin D, Birnbaum E, et al. Hospital costs, resource characteristics, and the dynamics of death for patients with a primary diagnosis of congestive heart failure. N Y State J Med 1989; 89: 60-63. McMurray J. Trends in hospitalisation for heart failure in Scotland 1980-1990. Eur Heart J 1993; 14: 1158-1162. McMurray J, Hart W. The economic impact of hearfailure on the U K National Health Service. Eur Heart J 1993; 14 Suppl: 133. Parameshwar J, Poole-Wilson PA, Sutton GC. Heart failure in a district hospital. J R Coll Physicians Lond 1992; 26: 139-142. Bourassa MG, Gurne O, Bangdiwala SI, et al. for the SOLVD investigators. Natural history and patterns of current practice in heart failure. J Am Coll Cardiol 1993; 22 Suppl A: 14A-19A. Folstein MF, Folstein SE, McHugh PR. "Mini-Mental State": a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 189-198. Ware JE, Snow KK, Kosinski M, Gandek B. SF-36 health survey: manual and interpretation guide. Boston: The Health Institute, New England Medical Centre, 1993 . SAS for the Microsoft Windows Environment, Version 6. Cary, NC: SAS Institute Inc, 1993. Stevenson CE. SF-36: Interim norms for Australian data. Canberra: Australian Institute of Health and Welfare, 1996. Kannel WB, Ho K, Thom T. Changing epidemiologic features of cardiac failure. Br Heart J 1994; 72 Suppl: S3-S9. (Received 8 Oct 1996, accepted 10 Apr 1997) Authors' details Westmead Hospital, Sydney, NSW. Fiona M Blyth, FAFPHM, Registrar, Department of Public Health and Community Medicine. Ross Lazarus, FAFPHM, Senior Lecturer in Epidemiology, Department of Public Health and Community Medicine, University of Sydney at Westmead Hospital. David Ross, FRACP, Head, Department of Cardiology. Michael Price, FRACP, Head, Geriatric Medicine Unit. Gary Cheuk, FRACP, Registrar, Geriatric Medicine Unit. Stephen R Leeder, FRACP, PhD, FAFPHM, Professor of Public Health and Community Medicine, University of Sydney at Westmead Hospital. Reprints will not be available from the author. Correspondence: Dr F M Blyth, Department of Public Health and Community Medicine, Westmead Hospital, Westmead, NSW 2145. ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Fiona M Blyth · Ross Lazarus · David Ross · Michael Price · Gary Cheuk · Stephen R Leeder

Troublesome lower urinary tract symptoms in the community: a prevalence study Carole B Pinnock and Villis R Marshall For editorial comment see Hirst & Ward Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Method - Population surveyed - Survey questionnaire - Results - Discussion - Key points of study - References - Authors' details - ©MJA1997 Abstract Objective: To determine the prevalence of troublesome lower urinary tract symptoms (LUTS) in men and women in the community. Design: Interview-based prevalence survey. Setting: Metropolitan and rural communities in South Australia, September, 1995. Subjects: Probability sample of 1204 men and 1686 women (aged over 18 years) weighted to reflect the age and sex distribution of the South Australian population. Data collected: Presence of storage (irritative) and voiding (obstructive) symptoms, based on the International Prostate Symptom Score questionnaire; satisfaction with urinary condition (quality-of-life measure); and visits to a doctor for urinary symptoms in the preceding 12 months. Results: The prevalence of one or more troublesome LUTS was 26% (318/1204) for men and 39% (662/1686) for women (all ages) and 48% (314/649) for men and women over 65. The most common troublesome symptoms in men and women were nocturia and frequency. Symptoms were significantly age-related in men, but less so in women, in whom symptom prevalence exceeded 30% for all age groups. Ten per cent of men (123/1204) and 15% of women (249/1686) had visited a doctor for a urinary problem in the previous 12 months. Nine per cent of men (104/1204) and 16% of women (274/1686) were substantially dissatisfied with their urinary condition. Symptom prevalence and dissatisfaction with urinary condition were significantly associated with visiting the doctor ( P < 0.0001), but only 28% (88/318) of men and 27% (179/662) of women with troublesome LUTS saw a doctor, and 63% (65/104) of men and 59% (162/274) of women dissatisfied with their urinary condition did not seek medical help. Conclusions: Although the prevalence of troublesome LUTS in the community is high, the number of people whose quality of life is substantially affected is much lower. The impact of these symptoms upon quality of life is a major reason for patients to see a doctor, yet many who are "bothered" by the symptoms do not do so. MJA 1997; 167: 72-75 Introduction As the community ages, conditions affecting the quality of life and activity of older people become of increasing concern. Lower urinary tract symptoms (LUTS) caused by benign prostatic hyperplasia (BPH) have been termed "prostatism" and may greatly affect the quality of life of older men;1-3 the consequent cost of treatment to the community is high.4 The prevalence of clinically demonstrated BPH is 20% in men aged 40-49 years and 40%-50% in those over 65 years.1,5,6 To document the prevalence of symptoms related to BPH, the International Prostate Symptom Score (IPSS)7 grades the presence of seven LUTS (nocturia, intermittency, urgency, weak stream, incomplete emptying, hesitancy, frequency) on a severity scale of 0-5. It also includes a disease-specific quality-of-life question. However, LUTS measured with the IPSS and related symptom scores may have a range of aetiologies. Urinary symptoms such as urgency and urge incontinence may be caused by idiopathic detrusor instability, changes in muscle contractility, and other non-obstructive causes related to ageing.8,9 The IPSS is thus a non-specific measure of LUTS possibly caused by BPH, and this is reflected by studies that have shown high symptom scores in men with other lower urinary tract conditions,10 and in women.11-13 In an Australian general practice survey, urological problems were given as 1.7% of reasons for encounter with a doctor (all ages, both sexes),14 while in older men 7%-14% of encounters were for urinary problems.15 But the number of people significantly "bothered" by LUTS appears to be very much greater than the number seeking medical help for the problem.5,6,15 Symptom prevalence varies between countries, but there is evidence that similar levels of symptoms have a similar impact on daily activities of living in different countries.16,17 The prevalence of LUTS has been measured with the IPSS or related indices in the Netherlands,18 Canada,19 the United Kingdom,5 France,20 Japan,21 Spain,22 New Zealand,23 Scotland and the United States;17 no community-based surveys of symptom prevalence have been undertaken in Australia. Because of this, we undertook a community survey to determine the prevalence of troublesome LUTS in men and women in South Australia. The symptoms surveyed are described as uncomplicated by the National Health and Medical Research Council.8 Our objective was not to derive a severity score, but to determine the presence or absence of troublesome symptoms, their impact on quality of life, and the proportion of individuals seeking medical help for such a problem. Method Population surveyed The Omnibus survey, a multiple-user household interview survey undertaken for health organisations in South Australia (SA), was used for the study. The methodology and results of its use in other studies have been reported.24-26 The sampling method provides a probability sample of the SA population: in the metropolitan sample, 10 dwellings are chosen from each of 320 census collection districts (1991 census) using a random starting point and selection is then based on every fourth household. One person aged over 15 years (the person whose birthday was last) is chosen per household. In the country sample, all cities/towns with a population of 10 000 or more are chosen, and the balance of the sample is chosen from centres with a population of 1000 or more, with weighting proportional to size. The sampling method was the same as for metropolitan dwellings. Sixty interviewers conducted 3016 interviews from the 4200 households selected. Data are weighted by the inverse of the individual's probability of selection, then reweighted to benchmarks derived from estimated resident population at 30 June 1993 by age, sex and local government area from the Australian Bureau of Statistics. The data analysed and presented have thus been weighted to represent the age and sex structure of the SA population. Survey questionnaire The questions were derived from the American Urological Association-7 BPH questionnaire,27 adopted by the World Health Organization (WHO) as the IPSS,7 and have been validated for test/retest reliability, validity and clarity. Respondents were asked if, in the previous 12 months, any of the following urinary symptoms were troublesome: a strong need to urinate (pass water) with little or no warning; needing to go again less than two hours after finishing urination; needing to get up twice or more at night to urinate; having a weak urinary stream; stopping and starting several times when urinating; wetting underclothes;20 and whether there were other troublesome urinary symptoms. Respondents were asked about the presence or absence of "troublesome symptoms" -- they were not asked to grade symptom severity. They were also asked about quality-of-life7 (level of satisfaction with their urinary condition, in seven categories: delighted, pleased, mostly satisfied, mixed, mostly dissatisfied, unhappy, terrible), and whether they had seen a doctor about any urinary problem in the past 12 months. Questions were piloted for ease of understanding, internal consistency and sensitivity in a group of 18 men, and subsequently in 50 further interviews with men and women. To ensure completeness and accuracy of recording, five per cent of each interviewer's work was selected at random and the respondent re-interviewed with selected questions. After data checking, any missing responses were followed up by telephone. Statistical analysis was done with SPSS for Windows version 6.1 (SPSS, Chicago, Ill, USA). Statistical significance was calculated with Pearson chi-squared tests, unless otherwise indicated. Results The initial sample drawn was 4200 houses, of which 4067 were occupied and defined as "households". Of these, 3016 households participated, a response rate of 74.2%. Of the 3016 people interviewed, 1734 were women (57.5%) and 1281, men (42.5%). The major reasons for non-response were refusal (601; too busy, not interested) and contact not established after six visits (293); 75.6% of interviews were in the metropolitan area and 24.4% in the country. Respondents were evenly spread across all age groups. Only adults aged over 18 years are included in the analysis reported here (1204 men, 1686 women). Twenty-six per cent of men (318/1204) and 39% of women (662/1686) reported one or more troublesome urinary symptoms, with no differences between rural and metropolitan respondents (men or women) (Box 1). The most common symptoms in both men and women were frequency and nocturia (Box 2). In men, nocturia increased significantly with age (from 4% in 18- to 24-year-olds to 33% in those over 65 years; P < 0.00001). Weak stream also increased, from 2% in 18- to 24-year-olds to 12% in men over 65 (P < 0.00001). Urgency, frequency and mild incontinence were reported more frequently by women than by men (all, P < 0.001), and, as stated above, the overall prevalence of troublesome urinary symptoms (i.e, prevalence of more than one symptom) was also higher in women (P < 0.00001). The prevalence of one or more storage (irritative) symptoms (i.e., urgency, frequency or nocturia) was 23% in men and 33% in women (P < 0.0001), with the prevalence of one or more voiding (obstructive) symptoms (i.e., weak stream and intermittency) being 6.7% and 6.4%, respectively (difference not significant). Under the category "other", the most common symptom was stress incontinence (n= 17/44; 38%) in women and medication side-effects in men (n= 4/16; 25%). Age-specific symptom prevalence varied between men and women. For men, there was a clear age dependence, with symptom prevalence exceeding 20% only after age 45. In women, the age-related increase was weaker, and symptom prevalence exceeded 30% in all age groups. For men and women over 65, symptom prevalence was 48% (314/649). While the percentage of respondents reporting troublesome urinary symptoms was high (Box 1), only 28% of men (88/318) and 27% of women (179/662) with troublesome LUTS had visited a doctor about a urinary problem during the preceding 12 months. Satisfaction with urinary condition seems to be a better predictor of visits to the doctor than symptom prevalence (one or more symptoms) -- only 6% (23/397) who were "pleased" with their urinary condition had visited a doctor for urinary symptoms, compared with 60% (39/65) who were "unhappy" with their urinary condition (P < 0.00001). Discussion This first study of LUTS in the Australian community shows a high prevalence of troublesome LUTS, which occurred across all ages, but particularly in older age groups (48% of men and women over 65 reported one or more symptoms). Other reports also show a high prevalence of urinary symptoms for older men, ranging from 35% in a United States study28 to more than 90% of men in a Canadian study.19 Specific symptom prevalence can also be high (e.g., 61% for urgency,6 and 51% for hesitancy5 ). Most studies show that the prevalence of mild symptoms is high, and that symptoms which substantially affect quality of life or trigger a visit to the doctor have a lower prevalence.3 The prevalence of severe or bothersome symptoms is often as low as 25% to 30% of the total symptom prevalence,5,29 suggesting that adaptation to mild symptoms may occur. A review of moderate to severe symptoms in four community-based studies reported prevalence rates of 14%-33% for men over 40 years,16 and agrees with the 37% (220/593) of men over age 45 reporting one or more troublesome urinary symptoms in our study. In our study the most common troublesome symptoms for men were nocturia and frequency. This agrees with studies in France,20 the Netherlands,29 and the United Kingdom,5 but not Scottish studies1,6 or a French study.3 Methodological differences, such as the wording of questions and framing of population sampling methods, may account for these differences. In our study, the prevalence of urinary symptoms associated with "prostatism" in men was the same for men and women aged 55 and over (Box 2). Other studies in clinical or selected populations have also reported high symptom scores in women.11-13 However, we found the prevalence of LUTS in women did not show the same age-specific trend as for men, and storage symptoms (urgency, frequency and nocturia) were more prevalent in women (33% [563/1686] for one or more symptoms) than men (23% [274/1204]), while voiding symptoms were similar in both groups. In a study of women with voiding symptoms undergoing urodynamic evaluation, relatively few women had outflow obstruction.11 While the overall prevalence of LUTS, particularly in those aged 55 and over, was similar in men and women in our study, the symptom profile (age-specific trend and individual symptom prevalences) differed, reflecting their potentially different aetiologies. For both men and women, impact on quality of life (measured by satisfaction with urinary condition) was strongly correlated with visits to the doctor, with this correlation being similar in men and women. This argues against some reports of men's "stoicism" in the face of urinary symptoms.1 However, the finding also suggests that men and women may be equally reluctant to seek medical assistance for LUTS. Sixty-three per cent (65/104) of men and 59% (162/274) of women substantially dissatisfied with their urinary condition were not visiting a doctor for the condition, which agrees with the substantial numbers not seeking help reported in other studies.1,5 Conversely, the small proportion of our participants who had seen a doctor despite being "delighted" with their urinary condition may represent preventive activity, such as checkups, or concern, for example, about prostate cancer. Other studies report a substantial impact of moderate to severe LUTS on quality of life. Activities of daily living were affected in 51% of men with clinically defined BPH,1 and working-age men reported symptoms as more bothersome than retirement-age men, despite experiencing them less frequently.6 People may be reluctant to seek help for LUTS because these symptoms are considered a normal part of ageing, because of the perceived stigma of the symptoms or fear of possible treatments,1 or (in men) because of stoicism.30 These possibilities need to be addressed in future studies, as does the possibility that rural men who were dissatisfied with their urinary condition were less likely than urban men to seek medical help (P = 0.057). The main reason patients visit doctors about their urinary condition may be to reduce its effect on their daily activities, and this is therefore an objective of treatment. Conservative measures such as bladder training, pelvic muscle exercises, diet and fluid-intake management as well as attention to functional factors may be helpful in achieving this when symptoms are mild. Key points of study High prevalence of troublesome lower urinary tract symptoms (LUTS) in Australian men (26%) and women (39%). Far fewer men and women are substantially dissatisfied with their urinary condition (9% men, 16% women) and seeking treatment (10% men, 15% women). But fewer than half of those who are substantially dissatisfied with their urinary condition seek medical help (38% men, 41% women). LUTS in men and women has different aetiologies and symptom profiles, although the prevalence of one or more symptoms in people over the age of 65 years is the same (48%). The impact on quality of life is the major reason for people to seek medical help. Conservative management strategies may reduce this impact when surgical or medical treatment is not indicated. References Garraway WM, McKelvie GB, Russell EBA, et al. Impact of previously unrecognised benign prostatic hyperplasia on the daily activities of middle-aged and elderly men. Br J Gen Pract 1993; 43: 318-321. Abramson ZH, Gofin J, Abramson JH. Obstructive prostatic symptoms: a community survey in Jerusalem. Int J Epidemiol 1994; 23: 797-804. Sagnier P, MacFarlane G, Teillac P, et al. Impact of symptoms of prostatism on level of bother and quality of life of men in the French community. J Urol 1995; 153: 669-673. Ahlstrand C, Carlsson P, Jonsson B. Estimated total costs of treating benign prostatic hyperplasia in Sweden. Scand J Urol Nephrol 1995; 29: 57-63. Jolleys JV, Donovan JL, Nanchahal K, et al. Urinary symptoms in the community: how bothersome are they? Br J Urol 1994; 74: 551-555. Tsang KK, Garraway WM. Prostatism and the burden of benign prostatic hyperplasia on elderly men. Age Ageing 1994; 23: 360-364. Mebust W, Bosch R, Donovan J, et al. Symptom evaluation, quality of life and sexuality. In: Second international consultation on benign prostatic hyperplasia. Paris: World Health Organisation, 1993: 131-143. National Health and Medical Research Council. Clinical practice guidelines. The managment of uncomplicated lower urinary tract symptoms in men. Canberra: AGPS, 1996. Yalla SV. Correlation of American Urological Association Symptom Index with obstructive and non-obstructive prostatism. J Urol 1995; 153: 674-680. Stoevelaar H, van de Beek C, Nijs H, et al. The symptom questionnaire for benign prostatic hyperplasia: an ambiguous indicator for an ambiguous disease. Br J Urol 1996; 77: 181-185. Chancellor MB, Rivas DA. American Urological Association symptom index for women with voiding symptoms: lack of index specificity for benign prostate hyperplasia. J Urol 1993; 150: 1706-1709. Chai TC, Belville WD, McGuire EJ, Nyquist L. Specificity of the American Urological Association voiding symptom index: comparison of unselected and selected samples of both sexes. J Urol 1993; 150: 1710-1713. Lepor H, Machi G. Comparison of AUA symptom index in unselected males and females between 55 and 79 years of age. Urology 1993; 42: 36-40. Bridges-Webb C, Britt H, Miles D, et al. Morbidity and treatment in general practice in Australia 1990-1991. Med J Aust 1992; 157: Suppl Oct 19: S1-S57. Ward J, Sladden M. Urinary symptoms in older men, their investigation and management: is there an epidemic of undetected morbidity in the waiting room? Fam Pract 1994; 11: 251-259. Bosch R. Use of the International Prostate Symptom Score (IPSS) in epidemiological studies and clinical practice -- a review. In: Third International Consultation on Benign Prostatic Hyperplasia. Monaco: World Health Organisation, 1995. Guess HA, Chute CG, Garraway WM, et al. Similar levels of urological symptoms have similar impact on Scottish and American men -- although Scots report less symptoms. J Urol 1993; 150: 1701-1705. Bosch JL, Niemer AQ, Kirkels WJ, Schroder FH. Signs and symptoms of benign prostatic hyperplasia in men screened for prostatic carcinoma. Prog Clin Biol Res 1994; 386: 97-107. Norman RW, Nickel JC, Fish D, Pickett SN. 'Prostate-related symptoms' in Canadian men 50 years of age or older: prevalence and relationships among symptoms. Br J Urol 1994; 74: 542-550. Sagnier PP, MacFarlane G, Richard F, et al. Results of an epidemiological survey using a modified American Urological Association symptom index for benign prostatic hyperplasia in France. J Urol 1994; 151: 1266-1270. Tsukamoto T, Kumamoto Y, Masumori N, et al. Prevalence of prostatism in Japanese men in a community-based study with comparison to a similar American study. J Urol 1995; 154: 391-395. Hunter D, Berra-Unamuno A, Martin-Gordo A. Prevalence of urinary symptoms and other urological conditions in Spanish men 50 years old or older. J Urol 1996; 155: 1965-1970. Nacey J, Morum P, Delahunt B. Analysis of the prevalence of voiding symptoms in Maori, Pacific Island and Caucasian New Zealand men. Urology 1995; 46: 506-511. Wilson D, Wakefield M, Taylor A. The South Australian Health Omnibus Survey. Health Prom J Aust 1992; 2: 47-49. MacLennan A, Wilson D, Taylor A. Prevalence and cost of alternative medicine in Australia. Lancet 1996; 347: 569-573. MacLennan A, Taylor A, Wilson D. Changes in the use of hormone replacement therapy in South Australia. Med J Aust 1995; 162: 420-422. Barry MJ, Fowler F, O'Leary M, et al. The American Urological Association Symptom index for benign prostate hyperplasia. J Urol 1992; 148: 1549-1557. Diokno AC, Brown MB, Goldstein N, Herzog AR. Epidemiology of bladder emptying symptoms in elderly men. J Urol 1992; 148: 1817-1821. Bosch JL, Hop WC, Kirkels WJ, Schroder FH. The International Prostate Symptom Score in a community-based sample of men between 55 and 74 years of age: prevalence and correlation of symptoms with age, prostate volume, flow rate and residual urine volume. Br J Urol 1995; 75: 622-630. McCallum J. Older Men's Health: Stoicism versus successful ageing. Proceedings of the National Men's Health Conference. Melbourne: AGPS, 1995. (Received 24 June 1996, accepted 17 Feb 1997) Authors' details Repatriation General Hospital Daw Park, South Australia Carole Pinnock, PhD, Principal Research Scientist, Division of Surgery; Villis R Marshall, MD, FRACS, Professor and Head, Department of Surgery, Flinders Medical Centre, and Division of Surgery, Repatriation General Hospital Daw Park. Reprints: Dr CB Pinnock, Division of Surgery, Repatriation General Hospital Daw Park, Daws Road, Daw Park, SA 5041. E-mail: spinncb AT rgh.sa.gov.au ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Carole B Pinnock · Villis R Marshall

Abstract Objectives: To estimate the number of pregnant women in New South Wales who had not been tested for gestational diabetes mellitus (GDM) during the period 1991-1994. Design: The number of women not tested for GDM was estimated from the recorded data available in the NSW Midwives Data Collection (MDC) annual reports and compared with three incidence surveys. Main outcome measure: The number of pregnant women not tested for GDM. Results: Over the four-year period, the average annual recorded MDC incidence of GDM was 2.2%. This percentage was adjusted up to 3.3% after review of the MDC validation study and an incidence study. However, the expected incidence of GDM from three incidence surveys was 6.6%. Thus, half of the pregnant women in NSW do not appear to have been tested for GDM. Conclusion: For the four-year period 1991-1994, an estimated 50% of women in NSW were probably not tested for GDM. MJA 1997; 167: 14-16 Introduction Gestational diabetes mellitus (GDM) is carbohydrate intolerance of variable severity with onset or first recognition during the current pregnancy.1 Undiagnosed, and therefore untreated, diabetes is a serious disorder of pregnancy with an increased perinatal mortality rate.2,3,4 Following the Australasian Diabetes in Pregnancy Society's (ADIPS) 1991 recommendation that all pregnant women should be tested for GDM in every pregnancy,5 the NSW Midwives Data Collection (MDC) recorded a gradual increase in the number of women with GDM from 1.5% in 1991 to 2.7% in 1994. In contrast, from surveys in other Australian centres since 1991, the incidence of GDM ranges from 5.5%-8.8%.4,6-8 The difference between these rates and those recorded by the MDC suggests that many women are still not being tested for GDM in NSW and are at risk of complications which could either be prevented or substantially reduced. The purpose of our study was to estimate the extent of undiagnosed GDM in NSW for the period 1991-1994 by estimating the number of pregnant women who had not been tested for GDM. Methods We obtained data from the NSW MDC annual reports for 1991-1994. It is a statutory requirement under the Public Health Act 1991 (NSW) that all births (including home births) are reported to the MDC, which records information on maternal medical and obstetric conditions, delivery and infant characteristics. Incidence of GDM recorded on the MDC was compared with the incidence of GDM found in three different Australian surveys. The sources of these data are shown in Box 1. The three surveys used the 75 g oral glucose tolerance test for the diagnosis of GDM based on the ADIPS criteria.5 According to these criteria, GDM is diagnosed if the fasting plasma glucose level is ≥ 5.5 mmol/L and/or the two-hour plasma glucose level is ≥ 8.0 mmol/L. By combining these data, we obtain an average incidence of GDM, which we refer to as the expected incidence. At the Mercy Hospital for Women in Melbourne, a 50 g glucose load is used and capillary blood samples taken for plasma glucose measurement; a diagnosis of GDM is made if the glucose level at one hour is ≥ 9.0 mmol/L and the glucose level at two hours is ≥ 7.0 mmol/L. The incidence of GDM during the period 1991-1994 was 8.8%.4 While the glucose load and diagnostic criteria are different, a comparison of the Mercy Hospital and ADIPS criteria found that they diagnosed similar women and in the same proportion.9 While the incidence of GDM will vary depending on the ethnic composition of the population being examined, these surveys all included a majority of people of European extraction. Validation of the NSW Midwives Data Collection A 1990 validation study of the MDC, using a 1% sample, found that the recording of data relating to GDM had a sensitivity of 66.7% and a specificity of 99.6%.10 That is, when a case of GDM was recorded it was accurate, but only two-thirds of the known cases were recorded. Therefore, by increasing the recorded MDC incidence by 50% (representing the underestimation of GDM according to the sensitivity data), we are likely to obtain the actual MDC incidence, which we refer to as the estimated incidence. A 1993 survey carried out in the Wollongong area to determine the incidence of GDM was compared with the recorded MDC incidence of GDM in the area.6 The MDC recorded a rate of 5.0%, while the survey found a rate of 7.2%. A 50% addition to the recorded MDC incidence (as indicated by the validation study) gave a figure of 7.5%, which is similar to the 7.2% found in the survey. Therefore, the addition of a 50% correction factor to the recorded MDC incidence of GDM is a reasonable approximation. Results The proportion of women with a diagnosis of GDM recorded by the MDC for each different Area Health Service in NSW between 1991 and 1994 is shown in Box 2. It was assumed that the accuracy of data recording in all Area Health Services was equal and had not changed over the four-year period. For the whole of NSW, the percentage of women diagnosed with GDM increased from 1.5% in 1991 to 1.9% in 1992 (P < 0.001) and from 1.9% in 1992 to 2.6% in 1993 (P < 0.001). There was no significant change between 1993 and 1994. For the four-year period, the overall recorded MDC incidence of GDM was 2.2%. In the Sydney metropolitan area, the incidence of GDM ranged from a high of 3.1% in the Central Sydney Area Health Service to a low of 1.5% in the Northern Sydney Area Health Service. The incidence of GDM in the main metropolitan areas of Sydney, Newcastle and Wollongong was 2.4%, which was significantly higher than the country areas (1.6%) (P < 0.001). Some country areas also showed marked changes over the four-year period. For example, the proportion of women diagnosed with GDM increased from 0.8% to 2.7% in the Mid West Area Health Service and declined from 3.4% to 0.8% in the Far West Area Health Service. By applying the 50% correction factor to the recorded MDC incidence of 2.2%, the estimated incidence of GDM is 3.3%. However, the expected incidence of GDM is 6.6% (Box 1). Therefore, half of the pregnant women in NSW during the period 1991-1994, or 173 534 women, were probably not tested for GDM. Discussion The expected incidence of GDM was derived from pooled incidence data from the three surveys where the diagnosis had been based on the ADIPS criteria. The lowest incidence was reported in the two surveys which used data gathered from prenatal clinics.7,8 A higher incidence was reported in the survey which included private patients in the data collection.6 The higher rate found in the survey which included private patients could be anticipated, as private patients are older than clinic patients and increasing age is a high risk factor for developing GDM.4 Thus, the expected incidence of GDM of 6.6% is likely to be conservative. The recorded MDC incidence of GDM for 1991-1994 was lower than the expected incidence. With the application of the 50% correction factor to the recorded MDC incidence (as suggested by the MDC validation study and by data collection in the Wollongong area6 ) and a conservative estimate for the expected incidence of GDM, it is possible that half of all the women who delivered in NSW between 1991 and 1994 were not tested for GDM. Some women may have decided not to be tested for GDM. Others may not have been able to tolerate the glucose solution. In most cases, however, the decision not to test would have undoubtedly been made by the clinician responsible. Box 2 shows that testing for GDM is not evenly distributed, with a recorded MDC incidence range of 0.7%-3.2%. Of particular concern is that lower than average rates of testing were found in areas where a higher than average rate of GDM could be anticipated. In metropolitan Sydney, the lowest number of recorded cases of GDM were from the Northern Sydney Area Health Service. The MDC has shown that this is also the Area Health Service with the highest proportion of women aged 35 years or over at the time of delivery, a risk factor for GDM. An incidence of GDM of at least 10%4 could be anticipated in this age group. Women with an Aboriginal background have a high incidence of GDM.8 The New England and Macquarie Area Health Service, with a high proportion of Aboriginal Australians, had a rate of GDM less than the non-metropolitan average. The Far West Area Health Service also has a high proportion of Aboriginal Australians, and the recorded incidence of GDM there fell over the four-year period from 3.4% to 0.8%. Observational studies of women with untreated GDM have found a higher perinatal mortality rate than that found in glucose-tolerant women.2,3 At the Mercy Hospital for Women in Melbourne, Beischer et al. showed that, despite a steady reduction in the overall perinatal mortality rate, women who were not tested for GDM (and therefore not treated) had a significantly higher perinatal mortality rate than women who were tested.4 An estimate can be made of the excess perinatal mortality rate for women in NSW who have not been tested for GDM ( Box 3). Although the recorded incidence of GDM has increased (particularly in the two years after the ADIPS recommendation for universal testing was made), our results confirmed our belief that not all pregnant women in NSW are being tested for GDM. This may have implications for perinatal mortality rates. References Metzger BE. Summary and recommendations of the Third International Workshop-Conference on Gestational Diabetes Mellitus; 1991 Dec. Diabetes 1991; 40 Suppl 2: 197-201. O'Sullivan JB, Charles D, Mahan CM, et al. Gestational diabetes and perinatal mortality rate. Am J Obstet Gynecol 1973; 116: 901-904. Pettitt DJ, Knowler WC, Baird R, et al. Gestational diabetes: infant and maternal complications of pregnancy in relation to third-trimester glucose tolerance in the Pima Indians. Diabetes Care 1980; 3: 458-464. Beischer NA, Wein P, Sheedy MT, et al. Identification and treatment of women with hyperglycaemia diagnosed during pregnancy can significantly reduce perinatal mortality rates. Aust N Z J Obstet Gynaecol 1996; 36: 239-247. Martin FIR. The diagnosis of gestational diabetes. Med J Aust 1991; 155: 112. Moses R, Griffiths R, McPherson S. The incidence of gestational diabetes in the Illawarra area of New South Wales. Aust N Z J Obstet Gynaecol 1994; 34: 425-427. Martin FIR, Ratnaike S, Wootton A, et al. The 75 g oral glucose tolerance in pregnancy. Diabetes Res Clin Pract 1995; 27: 147-151. Yue DK, Molyneaux LM, Ross GP, et al. Why does ethnicity affect prevalence of gestational diabetes? The underwater volcano theory. Diabet Med 1996; 13: 748-752. Henry OA, Shelley-Jones DC, Oats JN, et al. Comparison of the 50 g capillary plasma glucose tolerance test with the 75 g venous plasma glucose tolerance test in pregnancy. J Obstet Gynecol Res 1996; 22: 215-219. Epidemiology and Health Services Evaluation Branch, Public Health Division, NSW Health Department. Validation Study of the New South Wales Midwives Data Collection 1990. Public Health Bull 1993; 4 Suppl 8: S5. (Received 15 Jan, accepted 8 May, 1997) Authors' details Illawarra Area Health Service, NSW. Robert G Moses, FRACP, Clinical Director of Diabetes Services. Prince of Wales Hospital, Sydney, NSW. Stephen Colagiuri, FRACP, Director of Diabetes Services.

Robert G Moses · Stephen Colagiuri

Incidence of bloodborne virus infection and risk behaviours in a cohort of injecting drug users in Victoria, 1990-1995 Nick Crofts and Campbell K Aitken Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Authors' details - - ©MJA1997 Abstract Objective: To assess changes in risk behaviours for transmission of bloodborne viruses and incidences and prevalences of these viruses in a field-recruited cohort of injecting drug users. Design: Prospective longitudinal cohort study. Setting: Metropolitan and rural Victoria, June 1990 to December 1995. Subjects: 626 current injecting drug users (i.e., who had injected drugs within the previous 12 months). Main outcome measures: Seroconversion to HIV and hepatitis B and C viruses (HBV and HCV); risk behaviours for infection. Results: HIV incidence was very low (0.2 per 100 person-years). HCV incidence was high (10.7 per 100 person-years), but fell throughout the study, although the downward trend did not reach statistical significance. HBV incidence was moderate (1.8 per 100 person-years) and did not fall. Prevalence of risk behaviours, notably sharing needles and syringes, decreased significantly. Conclusions: Significant change has occurred in the risk behaviours of the cohort, confirming results of cross-sectional studies of injecting drug use. This change may be responsible for the apparent decline in HIV and HCV incidence. Further studies are needed to monitor the incidence of bloodborne viruses in injecting drug users. Efforts to decrease risk of transmission should continue. MJA 1997; 167: 17-20 Introduction Bloodborne viruses, especially the human immunodeficiency virus (HIV) and hepatitis viruses B and C (HBV, HCV), pose major risks to the health of people who inject illicit drugs.1 This is largely because of transfer of blood through sharing of contaminated injecting equipment or of environmental contamination in injecting settings, which in turn depends on the behaviour of injecting drug users (IDUs).2 The Victorian Injecting Drug Users Cohort Study (VICS) is the first longitudinal cohort study of IDUs carried out in Australia. At the inception of VICS in 1989, there was little Australian research into injecting drug use, and most studies were small, cross-sectional and retrospective.3 Information was needed about changes in IDU behaviour and their impact on the incidence of infection with bloodborne viruses among IDUs. The aims of VICS were: To develop methods for follow-up of active, field-recruited IDUs; To measure incidences of HIV, HBV, HCV and other bloodborne and sexually transmitted diseases among IDUs, and to investigate risk factors; To examine risk behaviour, behaviour change and influences on behaviour over time among IDUs; and To describe the natural history of injecting drug use in this cohort. This article describes the incidence of three bloodborne viruses (HIV, HBV and HCV) in the cohort, the prevalences of some important risk behaviours for transmission of these viruses and relationships between the two. Methods Subjects and assessment Subjects were current IDUs (i.e., who had injected drugs in the previous 12 months) and were recruited between June 1990 and March 1995. Because we wished to study a cohort of IDUs not necessarily in treatment and because of the difficulties in recruiting and following up IDUs over any length of time, novel methods were developed. These have been outlined previously.4,5 Subjects were recruited by peer outreach workers (former or continuing IDUs with extensive experience of the IDU "scene"), primarily through their own social networks and, to a lesser extent, from agencies (such as needle exchange programs and prisons). These outreach workers undertook all interviews, blood sampling and follow-up, after training in HIV counselling at the Melbourne Sexual Health Centre. Follow-up continued until December 1995. Interviews and collection of blood samples were initially intended to be at six-month intervals, but difficulties in tracking participants meant that interviews occurred opportunistically. The interview questionnaire included questions on demographics, frequency of drug injection, injecting history, needle-sharing, and other injecting practices. The full questionnaire is available from the authors on request. A blood sample was collected after interview if the situation allowed and the participant was willing. Inevitably, samples were not collected at every interview and fewer IDUs provided samples than were interviewed. Blood was tested for antibodies to HIV, HCV and HBV core antigen. Statistical analyses For calculating incidences, we assumed that seroconversion occurred on the date halfway between a seroconverter's last negative and first positive test. Confidence intervals for incidences were calculated using an exponential-error formula.6 The chi-squared trend statistic (2TR) was used to measure significance of trends in incidences and behaviours over time.7 Ethical approval The original study design and sub sequent modifications (including venepuncture, delivery of serological results, and pre- and post-test counselling by the peer outreach workers) were approved by the Institutional Ethics Committee of Fairfield Hospital, Melbourne, Victoria. Results Cohort description Data were obtained from 716 IDUs, but were insufficient for this analysis for 90. The remaining 626 IDUs provided contact and background data at an initial interview and detailed data at one or more follow-up interviews (maximum, 11). A total of 1663 follow-up interviews were conducted, with 267 IDUs (42.7%) completing only one follow-up questionnaire and 359 (57.3%) completing two or more, at an average interval of 259 days. Subjects were recruited from the community (431; 70%), agencies (134; 22%) and prisons (51; 8%). The prisoners were recruited between May and September 1994. Descriptive information was collected at the first interview. Of the 626 participants, 39% were women and 60% were men (one respondent was transsexual). Median age was 27.7 years (range, 14.9-63.2), and median age of first injection was 18 years (range, 10-60). Of 512 participants who had injected drugs in the previous month, 63.9% specified heroin as the drug most often injected and 33.6% specified amphetamines. For 420 participants who had injected in the previous week, median injection frequency was four times per week (range, 1-210). One hundred and eighty-eight participants (30%) reported injecting with a shared needle or syringe in the previous month. Prevalence of bloodborne viruses Nearly 6000 serological tests were performed on blood samples from 531 participants. Prevalences of HIV, HBV and HCV are shown in Box 1. On their first blood test, almost two-thirds of IDUs (62.4%) were found to have been infected with HCV, almost half (45.2%) with HBV and 3% with HIV. Between 1990 and 1995, the prevalence of HIV antibodies among those tested in each year declined significantly, from 6.3% to 0.7% (2TR = 12.49; P < 0.005). The prevalences of antibodies to HCV and HBV core antigen also varied over this period but with no discernible trend. Incidence of bloodborne viruses Only one person converted from HIV-seronegative to HIV-seropositive during the 599.8 person-years at risk captured by the study, an overall HIV incidence of 0.2 per 100 person-years (95% confidence interval [95% CI], 0.0-1.4). Seroconversions and incidences of HBV and HCV infection are shown in Box 2. Five participants seroconverted to HBV during 276.3 person-years at risk, an overall HBV incidence of 1.8 per 100 person-years (95% CI, 0.8-4.3). However, HBV incidence increased between 1992-1993 and 1994-1995, when four of the seroconversions occurred. However, first-test HBV prevalence did not vary significantly from year to year. Nineteen participants seroconverted to HCV during 177.6 person-years at risk, an overall HCV incidence of 10.7 per 100 person-years (95% CI, 6.8-16.8). One hundred and sixty-five participants remained HCV-seronegative throughout the study. Although there was a downward trend in HCV incidence between 1990-1991 and 1994-1995, comparison of 95% confidence intervals showed it did not reach statistical significance. Prevalence of risk behaviours The Figure shows prevalences of four risk behaviours over the 11 six-month periods of data collection. Bingeing (a period of heavier than usual drug use for the individual which may impair the ability to maintain safe behaviour) was common, with 41% of participants reporting at least one binge; however, the percentage who reported bingeing declined significantly over time (2TR = 4.5; P < 0.03). There were also significant downward trends in the percentage of current IDUs who shared needles and syringes (2TR = 5.5; P < 0.02), shared rinsing or mixing water (2TR = 12.8; P < 0.001) and were sometimes injected by others (2TR = 15.1; P < 0.001). Mean frequency of injecting in the cohort varied over time, ranging from five to nine times per week, without any significant trend. Figure: Prevalences of risk behaviours for transmission of bloodborne viruses in a cohort of Victorian injecting drug users, 1990-1995. Association between risk behaviours and incidence For the 202 participants who completed at least three interviews and reported continuing to inject, an attempt was made to relate the major risk behaviour -- sharing needles and syringes -- to HCV infection status (see Box 3). A gradient in both prevalence and incidence of HCV infection was apparent, related to the frequency that sharing was reported, although 95% confidence intervals for the incidences and a 2 test for the prevalences showed that these gradients were not statistically significant (2TR = 2.5; P = 0.28). However, 43 who were HCV-positive and two who seroconverted never reported sharing needles or syringes. Discussion We found that incidence of HIV among a cohort of Victorian IDUs was very low (0.2 per 100 person-years at risk), while incidence of HCV was high (10.7 per 100 person-years) and incidence of HBV was moderate (1.8 per 100 person-years). There was evidence that HCV incidence has decreased among Victorian IDUs, from 16.6 per 100 person-years in 1990-1991 to 8.1 per 100 person-years in 1994-1995, although the small number of seroconverters meant that the downward trend did not reach statistical significance. We also found significant declines in prevalence of risk behaviours, notably sharing of needles and syringes. There are several possible explanations for this apparent decline in risk behaviours. Firstly, it may be a real decline, as a similar decrease in risk behaviour was seen between the Melbourne arms of two cross-sectional national IDU surveys, in 19898 and 1994,9 respectively. Prevalence of sharing of injecting equipment (in the previous month) fell from 38%8 to 13% 9 of respondents, a statistically significant difference. These surveys had sample groups largely independent of the VICS cohort. Another explanation is that participants became less likely to report risk behaviour with time; this change in social desirability bias might also have been responsible for the difference between the results of the two national surveys.3 However, in our study, participants' increasing trust in their peer workers -- the basis for continued follow-up -- makes this unlikely. It is also possible that the cohort experienced greater attrition over time among IDUs whose behaviour was relatively risky. This might also explain the decreasing HCV incidence, with those most at risk of HCV infection seroconverting first. To evaluate this possibility, the study was kept open to new recruits until March 1995; the rise in HBV incidence in 1994-1995 reflects enrolment of a group at heightened risk of bloodborne viruses, most of whom were already exposed to HCV. Lastly, these results might simply reflect the natural history of injecting drug use (e.g., a move away from being injected by others with longer use) and have nothing to do with changes in the environment (such as educational campaigns). If so, cross-sectional studies would find a higher prevalence of risk behaviour among younger IDUs. However, such a difference was not apparent in a major national cross-sectional study of 812 IDUs.9 If the decline in risk behaviour is real, then it may indicate that information campaigns about modes of HCV transmission are having an effect among Victorian IDUs. As there is evidence that reduced needle-sharing reduces HCV transmission,10 this change in behaviour may be responsible for a decline in HCV incidence. Other studies of Australian IDUs have also found a high incidence of HCV infection, but our study is the first to note a fall in incidence.11 However, a decline in first-test HCV prevalence was seen among IDUs at a major methadone maintenance clinic in Melbourne.12 We have documented a phenomenon which needs further investigation -- new HCV infections in IDUs who report no needle-sharing. This raises the possibility that infection is being spread in other ways. Several key risk behaviours for transmission of bloodborne viruses among IDUs have been documented.13 Sharing needles and/or syringes is thought to offer the greatest potential for transmission of HBV and HCV because of the relatively large volumes of blood which can be exchanged. However, equipment such as mixing spoons and filters, as well as rinsing water and the environment (such as surfaces and hands), can also become contaminated and are potential vehicles for transmission. Alternatively, respondents may have unwittingly shared needles or been reticent about disclosing sharing behaviour. If routes of infection other than needle-sharing are involved in HCV transmission, they are likely to be substantially less efficient, as HCV incidence among IDUs who reported sharing at half or more of their interviews was almost four times greater than among those who reported no sharing. These data confirm that HIV is not spreading among Australian IDUs (in our cohort, HIV prevalence significantly declined) and that rates of risk behaviours for HIV transmission among this group are low.14 This difference in epidemiology of HIV and HCV is probably due to the much higher prevalence of HCV among IDUs and the much smaller volume of blood necessary, on average, to transmit HCV compared with HIV. Nevertheless, we found that risk behaviours for HCV transmission are continuing and that HBV, which is vaccine-preventable, is spreading. While HCV transmission may already be decreasing among IDUs, our results suggest that further and sustained behaviour change is possible and necessary if the spread of HCV among Australian IDUs is to be controlled. The results also indicate yet again the failure of our current policies on hepatitis B vaccination and the need for vaccination targeted to IDUs and prisoners.15,16 Acknowledgements The authors are grateful for the hard work of Jenny Kelsall, Michael Kerger, John Meade, Franz Hernberger, Vicky Hunt and the multitude of others associated with the Victorian Injecting Drug Users Cohort Study. We also gratefully acknowledge the support of the Victorian Health Promotion Foundation, the Drug and Alcohol Research and Education Advisory Council and the Commonwealth Department of Health and Family Services. Nick Crofts was supported by the Research Fund of the Macfarlane Burnet Centre for Medical Research. References Crofts N, Hopper JL, Bowden DS, et al. Hepatitis C infection among a cohort of Victorian injecting drug users. Med J Aust 1993; 159: 237-241. Saxon AJ, Caslyn DA, Jackson TR. Longitudinal changes in injection behaviours in a cohort of injection drug users. Addiction 1994; 89: 191-202. Crofts N, Webb-Pullman J, Dolan K. An analysis of trends over time in social and behavioural factors related to the transmission of HIV among injecting drug users and prison inmates. Canberra: AGPS, 1996. Crofts N, Hopper JL, Bowden DS, et al. Hepatitis C infection among a cohort of Victorian injecting drug users. Med J Aust 1993; 159: 237-241. Aitken CK, Crofts N. Effectiveness of peer interviewers in a cohort study of injecting drug users. In: Gooding R, Whelan G (editors). Proceedings of the Autumn School of Studies on Alcohol and Drugs. 1996 May 9; Melbourne. Melbourne: St Vincent's Hospital, 1996: 15-26. Clayton D, Hills M. Statistical models in epidemiology. Oxford: Oxford Science Publications, 1993: 6. Daly LE, Bourke GJ, McGilvray J. Interpretation and uses of medical statistics. Oxford: Blackwell Scientific Publications, 1991. Monheit B, Mijch A, Lewis V. Australian national AIDS and injecting drug use study: Melbourne 1989. Melbourne: Fairfield Hospital, 1991. Loxley W, Carruthers S, Bevan J. In the same vein: first report of the Australian Study of HIV and injecting drug use (ASHIDU). Perth: National Centre for Research into the Prevention of Drug Abuse, Curtin University of Technology, 1995. Crofts N, Jolley D, Kaldor J, et al. The epidemiology of hepatitis C virus infection among injecting drug users in Australia. J Epidemiol Community Health. In press. Hagan H, Des Jarlais DC, Friedman SR, et al. Reduced risk of hepatitis B and C among injection drug users in the Tacoma syringe exchange program. Am J Public Health 1995; 85: 1531-1537. Crofts N, Nigro L, Oman K, et al. Methadone maintenance and hepatitis C virus infection among injecting drug users. Addiction. In press. Lenaway DD, Guilfoile A, Rebchook G. Multiple HIV-risk behaviors among injection-steroid users. AIDS Public Policy J 1992; 7: 184-186. Crofts N, Ballard J, Chetwynd J, et al. Involving the communities: AIDS in Australia and New Zealand. AIDS 1994; 8 Suppl 2: S45-S53. Thompson SC, Oman K. Why should Australia adopt universal infant hepatitis B vaccination? Aust N Z J Public Health 1996; 20: 436-439. Crofts N, Stewart T, Hearne P, et al. Spread of bloodborne viruses among Australian prison entrants. BMJ 1995; 310: 285-288. (Received 10 Jan, accepted 16 May, 1997) Authors' details Epidemiology and Social Research Unit , Macfarlane Burnet Centre for Medical Research, Melbourne, VIC. Nick Crofts, MPH, FAFPHM, Head; Campbell K Aitken, PhD, Senior Research Officer. Reprints: Dr N Crofts, Epidemiology and Social Research Unit, Macfarlane Burnet Centre for Medical Research, PO Box 254, Fairfield, VIC 3078. E-mail: crofts @ mbcmr.unimelb.edu.au - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Nick Crofts · Campbell K Aitken

Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia". Abstract - Introduction - Methods - Data source - Study design - Analysis by demographic characteristics - Results - Discussion - Acknowledgements - References - Authors' details Abstract Objective: To examine patterns of surgical management of breast cancer among Australian women. Design: Retrospective survey of Medicare records (a national dataset of all services rendered on a "fee-for-service" basis for which a Medicare benefit has been paid). Patients: All Australian women (4683) who underwent surgery consistent with being for breast cancer in 1993 and for which Medicare benefits were paid. Main outcome measures: Proportions of women undergoing different forms of mastectomy, breast-conserving surgery and axillary surgery by patient age and State and region (urban or rural) of residence. Results: Modified radical mastectomy was the most common surgery, performed in 2097 of the 4683 women (44.8%), while 1868 (39.9%) had breast-conserving surgery. Frequency of breast conservation decreased significantly with age and varied significantly between States and region of residence. It ranged from 34% in Western Australia to 49% in South Australia and the Northern Territory, and from 34% among rural women to 42% among urban women. Axillary surgery was recorded for 83% of all women studied. Conclusions: There was substantial geographical variation in patterns of surgical management for breast cancer. The tendency for rural women to undergo mastectomy rather than breast-conserving surgery may reflect the relative lack of access to postoperative radiotherapy. We are unable to explain the variation between States. MJA 1997; 166: 626-629 Introduction Breast cancer is the commonest malignancy among Australian women after non-melanocytic skin cancer and is the commonest cause of cancer deaths in women.1 Until recently, the optimal management of breast cancer that is limited to the primary site (with or without axillary nodal involvement) was unclear, with some advocating routine mastectomy and others advocating a breast-conserving approach for selected patients. After randomised controlled clinical trials, a consensus has emerged that most patients with Stage I and II carcinoma of the breast (comprising about 80% of patients presenting with breast cancer) can be managed with a breast-conserving approach, with rates of local and regional control and survival equivalent to those obtained with mastectomy.2-6 Breast-conserving treatment also seems less disturbing to perceived body image and sexuality than mastectomy.7 Surgical management of breast cancer has been found to vary significantly between different population groups in the United States.8,9 We investigated surgical management of Australian women treated for breast cancer by analysing Medicare records, and assessing variations in management by patient age and State and region (urban or rural) of residence. Methods Data source Medicare statistics were obtained from the Commonwealth Department of Health and Family Services. They contain details of services rendered on a "fee-for-service" basis for which Medicare benefits were paid. They exclude services to public patients in hospitals and to Veterans' Affairs patients, and services for injuries that are eligible for compensation, unless an interim Medicare benefit is paid. Study design All women who received at least one Medicare benefit for surgical items on the Medicare Benefits Schedule (MBS) consistent with breast cancer surgery during the 1993 calendar year were included. These items comprised mastectomy -- simple, partial, extended simple, subcutaneous, modified radical an d radical -- and excision of a breast lump if followed by axillary dissection and/or radiotherapy. Medicare records for the first two quarters of 1994 were also examined to ensure that all subsequent episodes of breast surgery or radiotherapy were captured. It was assumed that very few patients would receive these treatments for non-malignant breast disease. Women who had had only excision of a breast lump but no radiotherapy or axillary dissection were excluded. Data recorded in addition to surgical procedure(s) were the date of service, and patient's personal identification number (PIN), date of birth, sex and postcode of residence. The identity of each person in the study was protected by a PIN which could not be decoded by the investigators. Analysis by demographic characteristics Patient age in 1993 was determined from year of birth, and State and region of residence from postcode. Postcodes were classified into regional zones according to the Rural, remote and metropolitan areas classification 1991 census edition.10 When a postcode extended into two regions, a factor based on population density was used to determine in which region it would be placed. To provide sufficient numbers for analysis in each State group, data were combined for the Australian Capital Territory (ACT) and New South Wales (NSW) and for the Northern Territory (NT) and South Australia (SA). Proportions were compared with the chi-squared test. Logistic regression analysis was performed with SPSS version 6.1.11 Results We identified 4683 women who received at least one Medicare benefit for surgical items consistent with breast cancer surgery in 1993. These represented 58% of the 8100 expected incident cases of female breast cancer in Australia in this year.1 Surgical procedures performed are summarised in Box 1 (below). Some form of total mastectomy was performed in 2815 women (60.1%), while surgery consistent with breast conservation was performed in 1868 (39.9%). The most frequently identified definitive surgical procedure was radical or modified radical mastectomy, with 2097 services recorded. It was the only surgical therapy in 1265 women, but was accompanied by other surgical items in 832. Patterns of surgery in different patient age groups are summarised in Box 2 (below). Breast-conserving surgery was most frequent in women aged less than 60 years, with the frequency falling to 32% in women aged 70 to 79 years. Variation in type of surgery by age was highly significant (chi-squared for trend = 16.3; P < 0.001). Frequency of breast-conserving surgery was significantly higher among women resident in urban regions than among those resident in rural regions (comprising large rural towns, rural areas and remote areas). Breast conservation was undertaken in 1462 of 3483 urban women (41.9%), but in only 397 of 1170 rural women (33.9%) (chi-squared = 23.3; P < 0.001). The frequency did not differ between women resident in large rural towns, in rural areas and in remote areas. The residential area of 30 women could not be classified. Patterns of surgery also varied significantly between States (Box 3), with breast-conserving surgery performed in 49.2% of those resident in SA and the NT, but in only 33.8% of those resident in Western Australia (WA). Multivariate analysis showed that this variation was not caused by State differences in population distribution between urban and rural areas. The axilla was treated surgically, either as part of a mastectomy or under specific axillary dissection MBS items, in 3889 women (83.0%). Frequency of axillary surgery was similar in most age groups, except those aged 80 years or older (Box 2). In this group, only 62.8% of women underwent axillary dissection versus 84.1% of women aged less than 80 years (chi-squared = 70.0; P < 0.001). Frequency of axillary surgery varied slightly between States, with WA having the highest rate and Tasmania the lowest (Box 2), but did not differ between urban and rural residents (2892 of 3483 [83.0%] urban residents and 970 of 1170 [82.9%] rural residents). Discussion We found that breast-conserving surgery was performed in almost 40% of Australian women undergoing breast cancer surgery reimbursed by Medicare in 1993. However, the proportion who underwent breast-conserving surgery tended to decrease with patient age and varied significantly beween States and between rural and urban women. Our results are similar to those of other studies of surgical care for breast cancer in Australia. In WA, Byrne et al. found that breast-conserving surgery was used in 29.4% of all women treated for breast cancer in 1989, and in 31.3% of those with "potentially eligible" tumours,12 compared with a figure of 33.7% for WA in our study. In NSW in 1988-1991, breast-conserving surgery was used to treat 40% of a series of 105 mammographically detected tumours,13 while a six-month survey of Victorian surgeons in 1990 found that breast conserving surgery was performed in 42% of cases of operable breast cancer.14 We found significant geographical variation in the proportion of women receiving breast-conserving surgery reimbursed by Medicare. Women living in rural or remote locations were more likely to undergo mastectomy. Breast conservation usually necessitates postoperative radiotherapy, and, as radiotherapy services are often not conveniently located for rural populations, this treatment can involve considerable social and financial costs to patients, which may influence the decision to undergo mastectomy. The proportion of women undergoing breast-conserving surgery also varied between States. This variation was not explained by differences between populations, such as proportions of women living in rural and urban regions. The reasons for this are unclear, but preference for mastectomy versus breast-conserving surgery among surgeons and women may vary between States, explaining the observed differences. Older women were less likely to have breast-conserving treatment. Similar patterns have been observed in surveys of breast cancer management.7 Some older women might reasonably prefer to avoid radiotherapy and be relatively less concerned about mastectomy. Alternatively, as the study could not detect women with breast cancer who had had only excision of the primary tumour but neither axillary dissection nor radiotherapy, if this treatment was more common in older patients, then the frequency of breast conservation may have been underestimated. The rates of axillary surgery were generally high and relatively uniform across age groups and between States and regions. Treatment of the axilla is not recommended for in-situ disease15 and may reasonably be withheld for a small invasive cancer, particularly in older women, possibly explaining the omission of axillary dissection for a proportion of study patients.16 Our study, using data collected routinely for administrative purposes, has several advantages over special purpose surveys. These include timeliness, economy, objectivity and standardisation of data recording. In addition, such a study offers the possibility of examining trends in service delivery over time by means of repeated reviews. Special purpose surveys usually rely on healthcare providers to donate their own, or staff, time to complete the survey instrument, which can be a problem for both researchers and healthcare providers. However, a review based on administrative datasets has some limitations. It can provide only descriptive information and does not give insight into the reasons for disease management decisions. As subjects were identified by interpreting MBS items from Medicare records, the presence of an underlying diagnosis of breast cancer was inferred and not independently verified -- for example, by data matching. Therefore, no information was available about clinical or pathological features of the tumours (e.g., stage and size of primary tumour), which would have influenced the choice of surgical management. In addition, some women who underwent surgery for a breast neoplasm other than carcinoma, or for benign disease, may have been included as subjects. We believe that these instances would be rare, and that the vast majority of cases represented women with primary carcinoma of the breast or carcinoma-in-situ. It was also assumed that patients who had one procedure performed on a private "fee-for-service" basis would have subsequent related services provided on the same basis. However, if substantial numbers of women with breast cancer moved to the public hospital system for part of their surgical management, then this study would have underestimated the frequency of subsequent, more extensive, surgery. This might have led to underestimation of the frequency of mastectomy and axillary dissection, and could have had a variable effect between regions because of differences in private health insurance rates. Guidelines for the treatment of early breast cancer have been published recently and are expected to improve standards of care and treatment,6 and to reduce variability in clinical practice. However, the optimal ratio of mastectomies to breast conserving-surgery in Australia remains unknown. Ultimately, the choice of treatment is a decision taken by each individual, informed by advice from her surgeon and information from other sources. Secondary analyses of data collected for reimbursement purposes, such as in our study, can shed no light on such decisions. Detailed surveys of patterns of care should be undertaken and deserve the support of the medical community. Acknowledgements We wish to thank the Medicare Statistics Section of the Department of Health and Family Services for the data supplied within this report. Special thanks to David Wong for his assistance in supplying data. References Jelfs P, Coates M, Giles G, et al. Cancer in Australia 1989-1990 (with projections to 1995). Canberra: Australian Institute of Health and Welfare, 1996: 7-16. Cancer Series No. 5. Jamrozik K, Byrne MJ, Fitzgerald CJ, et al. Breast cancer in Western Australia in 1989. I. Presentation. Aust N Z J Surg 1993; 63: 617-623. Fisher B, Bauer M, Margolese R, et al. Five year results of a randomised clinical trial comparing total mastectomy and segmental mastectomy with or without radiation in the treatment of breast cancer. N Engl J Med 1985, 312: 665-673. Veronesi U, Luini A, Del Vecchio M, et al. Radiotherapy after breast-preserving surgery in women with localized cancer of the breast. N Engl J Med 1993; 328: 1587-1591. Blichert-Toft M. A Danish randomised trial comparing breast conservation with mastectomy in mammary carcinoma. Br J Cancer 1990; 62 Suppl 12: S15. National Health and Medical Research Council. Clinical practice guidelines. The management of early breast cancer. Canberra: AGPS, 1995: 46-50; 133-162. Kiebert GM, de Haes JCJM, van de Velde CJH. The impact of breast-conserving treatment and mastectomy on the quality of life of early-stage breast cancer patients: a review. J Clin Oncol 1991; 9: 1059-1070. Samet JM, Hunt WC, Farrow DC. Determinants of receiving breast-conserving surgery. The surveillance, epidemiology and end results program 1983-1986. Cancer 1994; 73: 2344-2351. Nattinger AB, Goottlieb MS, Veum J, et al. Geographic variation in the use of breast-conserving treatment for breast cancer. N Engl J Med 1992; 326: 1102-1107. Department of Primary Industries and Energy and Department of Human Services and Health Rural, remote and metropolitan areas classification 1991 census edition. Canberra: the Departments, 1994. SPSS Inc. Statistical package for the social sciences [computer program]. Version 6.1. Chicago, III: SPSS Inc, 1994. Byrne MJ, Jamrozik K, Parsons RW, et al. Breast cancer in Western Australia in 1989. II. Diagnosis and primary management. Aust N Z J Surg 1993; 63: 624-629. Harrison RI, Glenn DC, Niesche FW, et al. Surgical management of breast cancer. Experience of the Central Sydney Health Service Breast X-ray Programme, 1988-1991. Med J Aust 1994; 160: 617-620. Hill DJ, White VM, Giles GG, et al. Changes in the investigation and management of primary operable breast cancer in Victoria. Med J Aust 1994; 161: 110-122. Balch CM, Singletary E, Bland KI. Clinical decision-making in early breast cancer. Ann Surg 1993; 217: 207-255. Silverstein MJ, Gierson ED, Waisman JR, et al. Axillary lymph node dissection for T1a breast c arcinoma. Cancer 1994; 73: 664-669.(Received 6 Sep 1996, accepted 3 Mar 1997) Authors' details Medical Oncology Unit, Canberra Hospital, Canberra, ACT. Paul S Craft, MPH, FRACP, Director. Commonwealth Department of Health and Family Services, Woden, ACT. John G Primrose, FRACR, Senior Medical Advisor; Julie A Lindner, Computer Analyst, Drug Utilization Sub-Committee Secretariat; Peter R McManus, BPharm, MMedSc, Secretary, Drug Utilization Sub-Committee of the Pharmaceutical Benefits Advisory Committee. No reprints will be available. Correspondence: Dr P S Craft, Medical Oncology Unit, Canberra Hospital, Canberra, ACT 2607. E-mail: PAUL_CRAFT@dpa.act.gov.au

Paul S Craft · John G Primrose · Julie A Lindner · Peter R McManus

Factors in accessibility of general practice in rural Australia John S Humphreys, Shari Mathews-Cowey and Herbert C Weinand Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - References - Authors' details - ©MJA1997 Abstract Objective: To ascertain the importance rural Australians attribute to different factors of accessibility in their decision to consult a general practitioner. Design: Survey by interview or delivery-and-collection questionnaire (participant's choice) based on the method of paired comparisons. Setting and participants: All residents of 10 small rural communities in north-west New South Wales aged over 16 years in July and August 1996. Main outcome measures: Rank order and relative importance of residents' preferences for choosing to consult a particular doctor. Results: Social accessibility or acceptability considerations were more important than geographical proximity in the choices of rural residents to consult a particular doctor. Elderly people, in particular, attributed most significance to acceptability and continuity of care. Geographical proximity ranked most highly for young and middle-aged people and men living in isolated communities. Conclusions: For rural inhabitants, geographical distance is not the sole or even the most important determinant in their choice of general practice care; rather, they will seek the services of a GP with whom they feel comfortable. Incentives programs designed to recruit and retain more GPs in rural practice must acknowledge the importance of attracting acceptable doctors. This requires that rural doctors acquire suitable clinical and communication skills to meet the diverse needs of their patients, as well as an understanding of rural culture. MJA 1997; 166: 577-580 Introduction The overwhelming importance attributed to health services, particularly medical services, by rural residents has been clearly demonstrated.1,2 Rural general practitioners, with their traditional involvement in cradle-to-grave activities, have assumed the role of healer, carer, counsellor and friend. Moreover, general practice is the first point of contact with the health care system, with 80% of Australians visiting a GP at least once each year, and 5.5 general practice attendances per capita in 1994-95.3,4 Compared with their urban counterparts, rural GPs see more patients but see them less often.5 The importance attributed to rural doctors, in particular, is influenced by two factors. Firstly, most rural dwellers (like most Australians) take health for granted. Invariably, their prime concern is with illness and sickness, so that the focus has traditionally been on the availability of curative treatment. Secondly, inaccessibility of GPs remains the greatest source of disuse and disadvantage for most rural residents. It is problems associated with lack of accessibility, combined with the shortage and mal distribution of GPs within rural Australia, that have contributed to the establishment of the General Practice Rural Incentives Program,3,6 designed to overcome the problem of lack of access to rural general practitioners and to improve their recruitment and retention in rural and remote areas. The importance of good access to health care services is not in dispute. However, we need a better understanding of specific criteria for measuring accessibility. Penchansky and Thomas identified five distinct factors underpinning access to a doctor.7 These were: availability (the existence of services in relation to patients' needs); accessibility (measured in terms of distance, time, cost and availability of transport); accommodation (how the service is organised to accept patients, measured in ways such as waiting time); affordability (in terms of economic access to the service); and acceptability (in terms of patients' attitudes towards a particular doctor). The issue of accessibility in relation to the decisions of rural people to consult a doctor has not been thoroughly investigated in Australia. As a result, ac cessibility is simply equated with geographical proximity. However, consumer perceptions of accessibility to health services are important considerations for policies designed to increase the availability and location of doctors in sparsely populated rural and remote areas. Here, we report some findings from a major study investigating ways of facilitating the provision of health care services to people in small rural and remote communities.8 In particular, we sought to identify the importance that consumers attribute to different factors of accessibility in their decision to consult a doctor. Methods The study area comprised ten small rural and remote communities located around Moree and Narrabri in the Barwon region of north-west New South Wales (see Box 1). The communities were Bellata, Boomi, Burren Junction, Croppa Creek, Garah, Gravesend, North Star, Pallamallawa, Warialda Rail, and Yetman. These communities, with populations of 50-300 residents, have neither a resident nor visiting doctor. To obtain medical services, residents must travel to larger regional centres (such as Moree and Narrabri in New South Wales or Goondiwindi in Queensland) or smaller intervening centres (like Warialda and Wee Waa in New South Wales). During July and August 1996, residents aged over 16 years from all occupied dwellings in these communities were invited to participate in a survey, either by interview or delivery-and-collection questionnaire. This choice was offered to maximise the response rate and to avoid inconvenience to participants. We asked respondents to consider the following five factors relating to social, geographical and economic factors of accessibility that were relevant to their decision to consult a doctor: A doctor who bulk bills; A doctor you can call any time; A doctor who is close or easy to get to; A doctor you feel comfortable with; and Being able to see the same doctor each visit. We chose these five factors on the basis of the importance attributed to them in the rural health literature,7,9 their ability to indicate the relative importance of geographical, social and economic factors of accessibility, and the constraints imposed by the paired comparison technique.10 We used paired comparisons to elicit respondents' attitudes relating to their decision to consult a doctor. The method involves presenting participants with pairs of stimuli, with instructions to choose one member of each pair on the basis of some criterion.10-12 Each factor is paired with every other factor in all possible combinations. The number of alternatives must be constrained as too many can result in fatigue for both respondents and researcher. The paired comparison method gives not only a rank order for the stimuli, but also an estimate of the interval separating the importance attributed to each, enabling a good deal of information to be obtained from a limited amount of material. The scale values for each of the factors reflect the characteristics of the data, and hence the origin is arbitrary. However, for purposes of comparison, the scaling is transformed to a base of zero. Thus, in this study, respondents were asked to choose, for each possible combination of our five factors, which of the two was more important in their decision to consult a doctor. To reduce bias, the pairs of alternatives were arranged so that each alternative appeared equally on the right and left (to control for space error), was alternated from right to left, and did not appear in consecutive pairs (instead, being spaced as far apart as conditions would permit).13,14 To ascertain any differences in the pattern of preferences, the data were broken down by age groups and the degree of isolation of the community. Consistent with previous research, the age groups used were: young (less than 35 years); middle age (35-54 years); and old age (55 years and over).1 A community's isolation was determined by the distance to the nearest doctor and the conditions of the roads. Isolated communities were designated as those located at least half an hour's drive from the nearest doctor (ranging between 55 and 100 kilometers), and whose residents were required to negotiate unsealed or minor roads regularly closed after rainfall. Results It was not possible to ascertain exactly from census data the total eligible population for this survey because of Australian Bureau of Statistics' confidentiality and anonymity regulations associated with small populations. However, of an estimated potential population of 455 people, 14% (63) refused to participate, 2% (8) were too sick to complete the interview, and a further 5% (25) failed to return the questionnaire. Overall, a total of 359 questionnaires were completed (response rate, 79%). Of these, 27 were eliminated from statistical analysis because of missing data, leaving 332 questionnaires. Box 2 shows the sex, age and degree of residential isolation of the participants, and the results of the paired comparison analysis together with the co- efficient of agreement (a measure of variation in responses) in each case.10 In all cases the coefficient of agreement was significant at the 99% confidence level, indicating that, within groups, the respondents showed significant agreement in the factors they considered most important in the decision to consult a doctor. The most important factor in deciding to consult a doctor was having a doctor with whom participants felt comfortable. Being able to see the same doctor generally ranked a close second. For people over 55 years, being able to see the same doctor was most important, especially for those whose place of residence was isolated. Being able to call a doctor at any time was the third most important factor, ahead of geographical proximity. This factor was very important for young and middle-aged people and for men living in more isolated communities (see Box 2). Geographical proximity to the doctor was consistently rated more highly for people living in isolated communities, and was the most important consideration for men from isolated communities. The significance of bulk billing (an indicator of economic access) did not rate highly among the five factors for any population subgroup. The importance attributed to the factors influencing participants' decisions to consult a doctor varied across age groups. For example, while geographical proximity to the doctor decreased in importance with increasing age, the significance of acceptability and continuity of care increased. Discussion It is important to recognise that the concept of accessibility comprises closely related factors that can influence both health care behaviour and use of general practice services. Geographical proximity is undoubtedly an important issue, more so at times when acute and emergency care are needed than in relation to more discretionary health care. It is interesting to note our finding that men from isolated communities rank geographical access to doctors as the most important consideration. This is consistent with recent studies that suggest rural men generally neglect their health, often choosing only to consult a doctor for acute medical care and invariably visiting the closest doctor to minimise work disruption.15 However, our findings show that, overall, rural residents consider social accessibility (or acceptability) and continuity of care to be more important than geographical proximity in both their decision to consult and their choice of a doctor. Rural Australians are prepared to travel further than necessary, often bypassing the closest GP, to consult a doctor with whom they feel more comfortable.16 This finding is also consistent with results of earlier research which showed that less than one-third of patients indicated proximity as the main reason for choosing their usual doctor.17 These results are particularly significant in regard to the rural elderly population. While it is commonly believed that elderly people are most disadvantaged by geographical distance (and hence that this factor might be the one they identify as most important), our results confirm findings from other studies showing that continuity of care and acceptability, rather than geographical proximity, are the more important aspects in explaining where rural elderly people seek medical care.7,18 The importance of acceptability and continuity of care over geographical accessibility has significant implications for recruitment and retention schemes, such as the General Practice Rural Incentives Program, as well as for rural general practice training programs generally. Our findings support the recommendations made at the 1994 Undergraduate Rural Curriculum Conference, which highlighted the importance of social factors, community issues and communication skills in developing a curriculum for rural general practice.19 It follows that a critical component of the evaluation of the effectiveness of the Rural Incentives Program should be the extent to which the program is attracting doctors who understand rural culture, the background and health needs of rural patients, and who appreciate and develop the personal skills and attitudes necessary to practise medicine effectively in rural communities. While acceptability is unquestionably an important factor in the decision to consult a doctor, exactly what determines acceptability requires further research. Results from a hospital-based consumer satisfaction survey undertaken in 1993-94 indicated information and communication, concern, respect and personalised attention, attention to the patient's condition, and skill were the most important variables affecting patients' satisfaction with doctors.20 One of the few Australian rural case studies into patients' attitudes to general practice services found that the most important qualities sought in a doctor were compassion and an ability to communicate.21 The authors of this study acknowledged that these priorities were not reflected in undergraduate medical education at the time. However, more focused and comprehensive research is required to identify the particular attributes patients value most highly from rural general practitioners. People use and choose health and medical services on the basis of not only their need for them, but also their perceptions of them and the value they place on them. A knowledge of the importance people attribute to the various factors associated with access to health services will assist policymakers in planning how best to allocate scarce resources, and the form those resources should take if they are to result in improved health outcomes in the community. References Humphreys JS, Weinand HC. Health care preferences in a country town. Med J Aust 1991; 154: 733-737. Humphreys JS, Weinand HC. Evaluating consumer preferences for health care services in rural Australia. Aust Geog 1991; 22: 44-56. Commonwealth Department of Health and Family Services. General practice in Australia 1996. Canberra: General Practice Branch of the Department, 1996. Australian Medical Workforce Advisory Committee. Australian medical workforce benchmarks. North Sydney: Australian Institute of Health and Welfare, 1996. Australian Medical Workforce Advisory Committee. The medical workforce in rural and remote Australia. North Sydney: Australian Institute of Health and Welfare, 1996. (AMWAC Report No. 1996.8.) Holub L, Williams B. The General Practice Rural Incentives Program, development and implementation: progress to date. Aust J Rural Health 1996; 4: 117-127. Penchansky R, Thomas JW. The concept of access: definition and relationship to consumer satisfaction. Med Care 1981; 19: 127-140. Humphreys JS, Mathews-Cowey S, Rolley F. Health service frameworks for small rural and remote communities -- issues and options. Armidale: University of New England, 1996. Buetow SA. What do general practitioners and their patients want from general practice and are they receiving it? A framework. Soc Sci Med 1995; 40: 213-221. Edwards A. Techniques of attitude scale construction. New York: Appleton Century Crofts Inc., 1957. Guildford JP. Psychometric methods. New York: McGraw-Hill, 1954. Kerlinger FN. Foundations of behavioral research. London: Holt Rinehart and Winston, 1970. Ross RF. Optimum orders for the presentation of pairs in the method of paired comparisons. J Educ Psychol 1934; 25: 375-382. Ross RF. Optimal orders in the method of paired comparisons. J Exp Psychol 1939; 25: 414-424. O'Hehir B. Men's health -- uncovering the mystery. Mt Gambier: SE Kingston Leader, 1995. Humphreys JS, Weinand HW. Health status and health care in rural Australia: a case study. Community Health Stud 1989; 13: 258-275. Humphreys JS, Rolley F. Health care behaviour and service provision in rural Australia. Armidale: University of New England, 1993. Williams SJ, Calnan M. Key determinants of consumer satisfaction with general practice. Fam Pract 1991; 8: 237-242. Commonwealth Department of Human Services and Health. Undergraduate Rural Curriculum Conference Report. Canberra: AGPS, 1995. Draper M, Hill S. The role of patient satisfaction surveys in a national approach to hospital quality management. Canberra: AGPS, 1995. Cymbalist Y, Wolff A. Patient attitudes to general practice services . Aust Fam Physician 1988; 17: 789-794 . (Received 14 Nov 1996, accepted 4 Apr 1997) Authors' details Department of Geography and Planning, University of New England, Armidale, NSW. John S Humphreys, PhD, Associate Professor; Shari Mathews-Cowey, BA(Hons), Junior Research Fellow; Herbert C Weinand, MS, Senior Lecturer. No reprints will be available from the author. Correspondence: Professor J S Humphreys, School of Health and Human Sciences, La Trobe University Bendigo, PO Box 199, Bendigo, VIC 3522. ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

John S Humphreys · Shari Mathews-Cowey · Herbert C Weinand

The risk of transmitting HCV, HBV or HIV by blood transfusion in Victoria Gordon S Whyte and Helen F Savoia Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Incident rates - Risk estimation - Results - Hepatitis B virus - Hepatitis C virus - HIV - Discussion - Acknowledgements - References - Authors' details - ©MJA1997 Abstract Objective: To report the incidence rate of hepatitis B virus (HBV), hepatitis C virus (HCV) and HIV in Victorian repeat blood donors and to derive the residual risk of transmission of the viruses by screened blood transfusion. Design: The interval from the previous whole blood donation was extracted retrospectively from Victorian Red Cross Blood Bank records for each of the 358 332 repeat donations given between March 1994 and December 1995. Records of repeat donors found positive for the viruses in this period were traced to the previous seronegative donation and accepted if screened by the same test. For each virus, the number of previous donations screened by the same test was calculated and the sum of all donation intervals used to derive the incidence of infection in the repeat donor population. Published intervals after infection (when a donation can be infective although seronegative) were used to calculate the risk of release of a seronegative unit which would be infective. Participants and setting: Homologous blood donors at the Red Cross Blood Bank of Victoria. Main outcome measures: Incidence rate of HBV, HCV and HIV in regular blood donors and risk of infective donations being seronegative. Results: The incidence of infection in repeat donors was: HBV: 1.67 per 100 000 person-years; HCV: 1.89 per 100 000 person-years; and HIV: 1.31 per 100 000 person-years. The risk of a seronegative repeat donation being infective was: HBV: 2.71 per million donations (adjusted to 6.45 to account for viraemias which remain seronegative); HCV: 4.27 per million donations; and HIV: 0.79 per million donations. Conclusion: The risk of transmitting HCV, HBV or HIV by repeat blood donors is low and compares favourably with overseas data. Repeat donors have an incidence rate of HIV and HBV comparable to that of the general population, but the incidence rate of HCV is lower for repeat donors than in the general population. MJA 1997; 166: 584-586 Introduction There are no current Australian estimates of the risks of transmission by blood of hepatitis B virus (HBV) or hepatitis C virus (HCV), although the theoretical risk of HIV transmission has been estimated to be less than 1 in 903 000.1 Accurate estimates of the risk of transfusion-transmitted viral infections are important data for the risk-benefit analysis of homologous blood transfusions and in assessing the cost-effectiveness of new screening tests or methods of donor assessment. Schreiber et al. recently reported estimates of the risk of transfusing blood collected during the infectious "window period" (the time between a non- reactive blood donation and a repeat blood donation confirmed positive by the same test) at five United States blood centres.2 We used a method similar to that of Schreiber et al. to estimate the incidence of HBV, HCV and HIV in repeat Victorian blood donors and the risk of collecting blood infective for the viruses but seronegative by screening tests. Window-period collections are responsible for most transmissions of these three viruses. Methods A glossary of terms is shown in the Box. The donation interval was extracted from Victorian Red Cross Blood Bank records for all repeat whole blood donations given in Victoria in the 22-month period 1 March 1994 to 31 December 1995. This period was chosen because an algorithm was finalised in March 1994 to decide whether a donor reactive to a second generation HCV screening test was truly positive, liable to transmit HCV and liable to the sequelae of infection.3 Patients attending for autologous, directed or therapeutic donations were excluded, as were donors returning for repeat testing or counselling only. Plasma donors were not analysed because they are selected from repeat donors, there are no seroconversions and plasma undergoes virucidal procedures in fractionation. In the study by Schreiber et al., seroconversion intervals all lay within a three-year period.2 In contrast, in our study, seroconversion intervals were not required to commence in the same period, but were taken back to the year of the introduction of the screening test for each virus that was used in 1994-1995 in order to increase the number of seroconversions available for study. Therefore, the study period was different for different tests, but required that the reactive donation was given between March 1994 and December 1995. HBV: Seroconverting donors were identified whose seroconversion interval lay between the introduction of the current HBV surface antigen test (Auszyme Monoclonal, Abbott Laboratories, Illinois, USA) in January 1994 and the end of the study in December 1995. HCV: Seroconverting donors were identified whose initial (negative) donation was given after the introduction of the current second generation screening test (Abbott HCV EIA 2nd generation, Abbott Laboratories, Wiesbaden, Germany) in December 1991 and whose second (reactive) donation was given between March 1994 and December 1995. HIV: Seroconverting donors were identified whose initial (negative) donation was given after the current screening test for HIV antibody (Genelavia MIXT. Screening kit for the detection of antibodies to HIV-1 and HIV-2 in serum/plasma by enzyme immunoassay. Sanofi Pasteur, Marne la Coquette, France) was introduced in July 1992 and whose second (reactive) donation was given between March 1994 and December 1995. The repeat donor population screened by the same test was calculated to match the seroconversion study period for each disease by assuming that all repeat donors in the study period gave blood on 31 January 1995 (midpoint of the study period). For HBV, the number of donors was found whose previous donation was less than 53 weeks before (January 1994); for HCV, the interval was 165 weeks (December 1991); and, for HIV, the interval was 134 weeks (July 1992). Incident rates The incident rate was calculated as the number of incident cases (i.e., the number of seroconversions) divided by the sum of the interdonational intervals, in person-years, as described by Busch et al.,3 of all the donors in the study period. Risk estimation To derive the residual risk of transmission of each virus, the number of seroconversions were multiplied by the reported window periods before seroconversion, expressed in fractions of a year. The product is the probability that a seroconverting donor gave an infectious unit of blood during the window period that was not detected as seropositive by the screening tests currently in use and could therefore have been given in a blood transfusion.2 Results Repeat whole blood donors gave 358 332 donations in which the interdonational interval lay between March 1994 and December 1995. Half of the interdonational intervals were 12-15 weeks, with none less than 12 weeks. Ninety per cent of interdonational intervals were less than 54 weeks. Hepatitis B virus There were two seroconversions in the interval covered by the same screening test. There were 325 534 interdonational intervals after January 1994, calculated as 53 weeks before the end of January 1995, representing 6 221 761 person-weeks. The incidence rate of HBV was therefore 2 in 6 221 761 person-weeks, or 1.67 per 100 000 person-years. Interdonational intervals for the two seroconvertors were 77 and 178 days. The HBV window period is thought to be 59 days (range, 37-87),5 so the previous donation of each of the two seroconvertors could have been falsely negative for a total window period of 118 days (range, 74-174) in 6.22 million person-weeks, or 2.71 per million donations. The risk of giving blood infective for HBV (i.e., in the window period) was therefore 2.71 per million donations (range, 1.70-4.00). Hepatitis C virus There were three seroconverting whole blood repeat donors whose seronegative donation was after December 1991 and whose second (reactive) donation was between March 1994 and December 1995. Interdonational intervals for the three seroconvertors were 96, 651 and 1369 days, respectively. Of the 358 332 repeat donations in the 22 months from March 1994, the first donation of 349 226 interdonational intervals was given after December 1991, calculated as 165 weeks before the end of January 1995. The intervals represent 8 221 189 person-weeks, giving an incidence rate of HCV of 1.89 per 100 000 person-years. The HCV window period for second generation antibody tests is considered to be 82 days (range, 54-192).3,6 The risk of donating blood infective for HCV but seronegative was therefore 246 days (range, 162-576) in 8 221 189 person-weeks, or 4.27 per million donations (range, 2.82-10.01). HIV There were two seroconverting whole blood repeat donors whose seronegative donation was after July 1992 and whose reactive donation was between March 1994 and December 1995. Interdonational intervals for the two seroconvertors were 279 and 223 days. There were 347 076 interdonational intervals after July 1992, calculated as 134 weeks before January 1995. The donations represent 7 951 347 person-weeks, or 152 911 person-years, giving an incidence rate of HIV of 1.31 per 100 000 person-years. The HIV window period for second generation tests is considered to be 22 days (range, 6-38).7 The risk of donating blood infective for HIV but seronegative was therefore 44 days (range, 12-76) in 7 951 341 person-weeks, or 0.79 per million donations (range, 0.22-1.37). Discussion The effect of modifying the model used by Schreiber et al.3 depends on the length of the interdonational intervals of the study population compared with the intervals for seroconvertors. If long interdonational intervals are characteristic of seroconvertors, there will be a progressive overestimation of incidence in our model compared with that of Schreiber et al. This is because the total population of intervals is skewed strongly towards 12-15 weeks, and long intervals are under-represented in this study. HBV: Schreiber et al. argued that the true risk of a seronegative donation which is nevertheless infective is higher than that identified by HBV surface antigen because only 42% of HBV incident infections persist to be detected by the HBV surface antigen assay.2 Application of this adjustment to the risk in Victoria yields a window-period risk of 6.45 per million donations (range, 4.05-9.52). The comparable figure in the United States is 15.83 per million (range, 6.82-31.97)2 and, in France, 8.45 per million (range, 2.8-25.2).8 In our study, the unadjusted incidence of HBV in Victorian repeat volunteer donors was 1.67 per 100 000 person-years, comparable to the unadjusted incidence in the Australian general population of 2.4 per 100 000 person-years.9 The similarity of the two figures suggests that the critical factors for community transmission of HBV have not been identified well enough to assist in donor selection. During the study period, each time they donated blood donors signed a form stating that they had not engaged in male-to-male sex or used intravenous drugs. HCV: A current estimate of the incidence of HCV in Australia is 7.6 per 100 000 person-years.10 The estimate has been considered unreliable because of the unlikeliness that mild cases would be detected, although most of the individuals tested were more likely to be at high risk. Locarnini et al. hypothesised that if the number of incident cases were underestimated by a factor of three, and that 75% were intravenous drug users, then the true rate could be extrapolated to 22.2 per 100 000 per year.11 In our study, the 10-times-lower incident rate of HCV in repeat donors of 1.89 per 100 000 person-years is evidence of the low-risk behaviour of repeat volunteer blood donors. The risk of transmission of HCV by blood transfusion in Victoria in the window period was 246 days in 8 221 189 person-weeks, or 1 in 234 000 donations (range, 100 000-355 000). The comparable United States figure is 1 in 103 0002 and, in France, 1 in 223 000.8 HIV: The incidence of HIV in Australia is thought to be 480 per year from 1993, or 2.7 per 100 000 person-years.12 Our study shows that repeat Victorian blood donors have an incidence of HIV of 1.31 per 100 000 person-years. The limited reduction in the incidence of HIV in repeat volunteer donors is evidence of an increasing proportion of seroconversions caused by activity not identified as high risk. The risk of collecting a seronegative but HIV-infected donation in the window period is 1 in 1.27 million, similar to the calculation by Dax et al.1 The comparable United States figure is 1 in 493 0002 and, in France, 1 in 571 000.8 The incidence rate of HBV and HIV in regular blood donors is comparable to that of the general population. This suggests that donor assessment is ineffective in repeat donors, presumably because those who contract HBV or HIV do not regard themselves as at risk by the criteria applied by the blood bank. The incidence rate of HCV is lower for regular blood donors than the general population. The relative effectiveness of HCV discrimination presumably reflects the lack of experimentation by regular donors with intravenous drugs. The risk of window-period transmission of HBV, HCV and HIV in Victoria is low and compares favourably with overseas figures. The risk is probably overestimated for HIV because of the long seroconversion intervals. Care should be exercised when generalising from these figures because of the small number of seroconversions. However, the medical community and the general public should be reassured by this evidence that the blood supply is very safe. Acknowledgements We wish to thank John Butler, Christine Carroll, Phil Keily and Tony Chan at the Red Cross Blood Bank Victoria for data collation and processing, and John McNeil of Monash University for critical review of the manuscript. References Dax EM, Healey DS, Crofts N. Low risk of HIV-1 infection from blood donation: a test-based estimate. Med J Aust 1992; 157: 69. Schreiber GB, Busch MP, Kleinman SH, Korelitz JJ. The risk of transfusion-transmitted viral infections. N Engl J Med 1996; 334: 1685-1690. Busch MP, Korelitz JJ, Kleinman SH, et al. Declining value of alanine aminotransferase in screening of blood donors to prevent posttransfusion hepatitis B and C virus infections. Transfusion 1995; 35: 903-910. Strasser SI, Smith BC, Watson KJR, et al. Evaluation of blood donors with equivocal hepatitis C serological results. Med J Aust 1995; 162: 459-461. Mimms LT, Mosely JW, Hollinger FB, et al. Effects of concurrent acute infection with hepatitis C on hepatitis B virus infection. BMJ 1993; 307: 1095-1097. Lelie PN, Cuypers HT, Reesink HW, et al. Patterns of serological markers in transfusion transmitted hepatitis C infection using second generation HCV assays. J Med Virol 1992; 37: 203-209. Busch MP, Lee LL, Satten GA, et al. Time course of detection of viral and serological markers preceding human immunodeficiency virus type 1 seroconversion: implications for screening blood and tissue donors. Transfusion 1995; 35: 91-97. Courouce A-M, Pillonel J. Transfusion transmitted viral infections. N Engl J Med 1996; 335: 1609-1610. Kaldor JM, Plant AJ, Thompson SC, et al. The incidence of hepatitis B infection in Australia: an epidemiological review. Med J Aust 1996; 165: 322-326. Andrews R, Curran M. Enhanced surveillance for incident cases of hepatitis C in Australia, 1995. Communicable Diseases Intelligence 1996; 20: 384-388. Locarnini S, McAnulty. Hepatitis C surveillance [editorial]. Communicable Diseases Intelligence 1996; 20: 388-389. Feachem RGA. Valuing the past -- investing in the future: evaluation of the National HIV/AIDS Strategy 1993-94 to 1995-96. Canberra: Commonwealth Department of Human Services and Health, 1995: 29-40. (Received 5 Dec 1996, accepted 16 April 1997) Authors' details Red Cross Blood Bank, Southbank, VIC. Gordon S Whyte, FRACP, FRCPA, Director; Helen F Savoia, MB BS, Registrar. No reprints will be available from the author. Correspondence: Dr G S Whyte, PO Box 354, South Melbourne, VIC 3205. E-mail: gwhyte @ rcbbv.org.au ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Gordan S Whyte · Helen F Savoia

Urinary diagnosis of gonorrhoea and chlamydia in men in remote Aboriginal communities Steven J Skov, Penny Miller, Wayne Hateley, Ivan B Bastian, Jenny Davis and Peter W Tait MJA 1997; 166: 468 For editorial comment see Waddell Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Authors' details - ©MJA1997 Abstract Aims: (1) To evaluate the acceptability and validity of an intervention based on urine tests for diagnosis and treatment of gonorrhoea and chlamydia in men in remote Aboriginal communities. (2) To provide a prevalence estimate of these infections in the male population in the surveyed communities. Methods: First-void urine samples from 460 men in remote communities and 33 men in the Alice Springs Gaol were tested for gonorrhoea and chlamydia with at least one of polymerase chain reaction (PCR), enzyme immunoassay (EIA) and culture (gonorrhoea only). Results: One hundred and three men (20.9%) were infected with gonorrhoea or chlamydia. The prevalence of infection for gonorrhoea only was 11.7%, for chlamydia only 4.1% and for dual infection 5.1%. Eighty-eight infected men and 45 of their sexual partners were recorded as having been treated within two months of testing. PCR tests detected the largest number of infections and were the easiest to use. Conclusions: The prevalence of these infections was higher than anticipated. Urine PCR tests were acceptable to men and are well suited to the remote-community setting. As an effective alternative to urethral swabs, they permit a range of community-based strategies to address high rates of infection with gonorrhoea and chlamydia. MJA 1997; 166: 468-471 Introduction The rates of sexually transmitted diseases (STDs) in central Australia, particularly gonorrhoea and chlamydia, are among the highest in Australia and indeed the world,1,2 despite a modest decline in gonorrhoea over the past 15 years (according to notifiable diseases data from the health departments of South Australia, Western Australia and the Northern Territory). Although these infections are more common in this region than in the rest of Australia among both Aboriginal and non-Aboriginal people, most of the excess morbidity occurs among Aboriginal people (health departments' data). Many factors contribute to this situation. Dispossession, unemployment and their sequelae are the fundamental determinants of the poor health of Aboriginal people and also underlie the observed high levels of STDs. The serious under-resourcing of central Australian health services, the difficulty in maintaining confidentiality in small communities, the stigma attached to STDs, the unpleasant nature of urethral and endocervical swabs and, in particular, the frequent lack of male health care workers -- all militate against effective STD programs.3-5 Urine tests for the detection of gonorrhoea and chlamydia are now commercially available. Enzyme immunoassay (EIA) tests have sensitivities above 80% and specificities above 93%,6-9 while polymerase chain reaction (PCR) tests have reported sensitivities of 90%-100% and specificities of 98%-100%.10-14 These technologies offered exciting possibilities to address some of the difficulties in delivering STD services, so, after receiving approval from the Alice Springs Institutional Ethics Committee, the Tri-State STD/HIV Project (TSP), in collaboration with Nganampa Health Council (NHC) and the Central Australian Aboriginal Congress (CAAC), both organisations controlled by Aboriginal communities, undertook the programs described in this article. Methods The study was undertaken in four parts. Phase I: NHC provides health services to several remote Aboriginal communities and conducts annual syphilis serology screening programs in these communities. NHC maintains a population register, and all persons between the ages of 12 and 40 years who are in the communities during the screening programs are sought out and asked to participate. In April 1995, 189 men participating in this program in three communities serviced by NHC were asked to give a first-void urine sample in addition to the blood sample for the syphilis test. Phase II: In June 1995, another 218 men in the remaining three NHC communities had urine tests only; all males over the age of 12 who were present in the communities at the time were asked to participate. Phase III: In October 1995, a further 53 men were tested who had not been previously tested. Phase IV: CAAC, as part of its many functions, provides the health service to the Alice Springs Gaol. In June 1995, 33 new inmates were asked to give a first-void urine sample as part of their comprehensive health check on admission. Diagnostic tests used for gonorrhoea were culture, EIA (Abbott Gonozyme, Chicago, IL) and PCR (Roche Amplicor CT/NG, Branchburg, NJ) and for chlamydia were EIA (SYVA MicroTrak II, Palo Alto, CA) and PCR (Roche Amplicor, Branchburg, NJ) (Box 1, below). If there was insufficient urine for all tests, the order of priority was to do PCR first, then culture, chlamydia EIA and finally gonococcal EIA. To check for cross-contamination between PCR specimens, all Phase III specimens that provided sufficient urine were divided before any PCR procedures were performed. When a positive result was obtained the other half of the original sample was retested. Chocolate and/or Thayer-Martin agar plates incubated in candle jars or CO2 gaspacks were used for gonococcal culture. BioCult GC tubes (Orion Diagnostica, Espoo, Finland), which contain a modified Thayer-Martin dipslide and a CO2-generating tablet, were also trialled. Culture media were inoculated with sediment from 10 mL of centrifuged urine and incubated for up to 72 hours at 35oC on-site and/or at Western Pathology in Alice Springs. Neisseria gonorrhoeae was identified by standard methods: typical morphology of colonies, oxidase paper test, microscopy with Gram stain, and latex agglutination (Phadebact GC, Boule Diagnostics AB, Huddinge, Sweden). Urine samples for EIA and PCR were prepared on-site according to the test manufacturer's specifications and then sent to Western Pathology in Alice Springs for processing. Male Aboriginal health workers and registered nurses in each clinic were responsible for liaison with the community and collection of specimens. Each man was asked to give 25-40 mL of first-void urine in a sterile collection jar. No urethral swabs were sought. Initial preparation of urine specimens for transport to the laboratory was completed within three hours of collection. A diagnosis of infection was made and treatment was initiated if any test was positive. Resident clinic staff were responsible for offering treatment, further investigation and safe-sex education to infected men and their sexual partners. Results Study population We tested urine samples from 493 men, of whom 460 lived in six remote communities and 33 were gaol inmates. Acceptability to clients was high, with fewer than 10 men (exact count not possible) declining testing. The 460 men from remote communities represented about 60% of the male population over the age of 12 in the area serviced by the participating clinics (Box 2, below). The proportion of men tested in different communities varied from 28% to 85%. The rate of infection Based on all methods of diagnosis combined, 103 of the men tested (20.9%) were found to be infected with either gonorrhoea or chlamydia. The rate of infection in different communities varied between 14.5% and 26%. Among the gaol inmates, who originated from all parts of the southern NT, seven (21.2%) were infected. Most infections (90.3%) occurred in men aged 15-39 years and the five-year age-specific prevalence of infection in this group varied from 22% to 27% (Box 2, above). Treatment and follow-up Eighty-eight men were treated within two months of testing. The average delay between testing and treatment was 18 days. Forty-five sexual partners of infected men were also recorded as having been treated. Performance of the tests used Different combinations of tests were used in different phases. The volume of urine received from each man varied, so it was not always possible to do all the intended tests. A summary of the numbers of specimens subjected to the various tests and their relative performance is shown in Box 3 (below). During Phase II, culture for gonorrhoea using both BioCult GC tubes and standard Thayer-Martin plates was performed on 193 urine specimens. Thirteen diagnoses were made with the BioCult GC tubes and only seven were made with standard Thayer- Martin plates: all cases positive on Thayer-Martin plates were also positive on the BioCult GC tubes. During Phase III, 19 of the 20 initially positive PCR results were retested (in one case there was insufficient urine). In 18 of these cases there was complete agreement between the first and second test. One chlamydia-positive specimen was negative on the second testing. However, because of delays in transport, the tests on this specimen were done at six and eight days after collection, well in excess of the four days maximum recommended by the test manufacturers. Discussion These results highlight the need for improvements in current STD control, including surveillance programs. Based on routine clinic activity and notifications, NHC reported only 38 men with either gonorrhoea or chlamydia during the whole of 1994 (health departments' notifiable diseases data), compared with the 96 cases detected in this study. Other regions of Australia that have comparable notification rates of these infections1 may have similar problems in underdetection. The variation in participation rates in different communities and age-groups was largely attributable to the numbers of people who happened to be present at the time of the study (people in these remote communities being highly mobile), the working relationship between community members and the health staff, and the assiduousness of the health staff in conducting the program. In central Australia it is often considered, without specific evidence, that people who do not participate in such programs may be at higher risk of infection. Recent work by NHC showed no difference in rates of syphilis infection between those tested during the main body of a screening program and those tested later as part of an effort to test non-participants (Dr Penny Miller, unpublished data). The screening programs in our study were intended to identify the most effective and practical tests for everyday use in remote clinics. Collection of urethral swabs was avoided because it would not have been acceptable to the community. Hence, the study lacked a diagnostic "gold standard" and could not formally evaluate sensitivities and specificities. The published specificities of all the tests were high -- above 98% for urine PCR tests.10-14 The procedures used in Phase III demonstrated no problems with cross-contamination in PCR testing. Several studies have suggested that urine PCR tests for chlamydia are more sensitive than urethral-swab culture and highly specific.10-13 Less work has been done on urine PCR for diagnosing gonococcal infection, but two studies indicate sensitivities above 90% and specificities of 100%.13,14 In ideal conditions, the sensitivities of urethral-swab microscopy and culture are 90%-98%,15,16 but are likely to be much less in remote communities because of high staff turnover, the use of non-nutritive transport media, and frequently prolonged transport times. In such circumstances, urine PCR may be as good as or better than urethral-swab microscopy and culture for diagnosis of gonorrhoea. In any event, according to local management protocols,17 all men presenting to clinics with urethritis are offered immediate treatment for both gonorrhoea and chlamydia. In terms of practical application, PCR was superior to culture for gonorrhoea and EIA for both infections. PCR tests detected more infections with either organism than did the other tests (Box 3). Assuming that the high published specificities for the PCR tests held under field conditions, this increased rate of detection would be attributable to a superior sensitivity. The PCR test was also the easiest to use: urine is simply stored and transported at 4¡-8¡C in the same jar used to collect it. The urine must then be processed in the laboratory within four days (test manufacturer's instructions), which is usually feasible in most remote situations. In contrast, both EIA tests used require centrifuging before transport, and the SYVA MicroTrak II EIA required addition of a transport buffer. However, PCR tests do not provide information about antibiotic susceptibility. If PCR technology is to be used as the principal diagnostic tool for gonorrhoea, there would need to be accompanying sentinel systems for gonococcal culture and antibiotic susceptibility. We found that culture of first-void urine was positive in 72% of diagnoses of gonorrhoea. Sensitivities of 70%-100% for urine culture of gonorrhoea have been reported.18,19 On this basis, urine culture in addition to urine PCR for diagnosis of gonorrhoea could be performed routinely at sentinel sites and during similar programs to those reported here in order to maintain antibiotic-sensitivity surveillance. In the field situation, the BioCult GC tubes detected more gonorrhoea than standard Thayer-Martin plates and were easier and more convenient to use. The accuracy, ease of use and acceptability to men of urine PCR tests suggest several strategies to make clinical services more accessible to people, reduce the amount of disease in the community and identify individuals who are in need of safe-sex education. The use of urine tests for routine diagnosis may encourage more men to present with an STD, even if there is no male practitioner present. Health services could adopt active case-finding strategies such as opportunistic testing when people present for other reasons, including annual comprehensive health checks or community surveys. Such strategies are under consideration by health services in central Australia. For example, CAAC is seeking funding to establish an outreach program via a mobile clinic to make comprehensive well-men's check-ups, including STD checks, accessible to Aboriginal men in Alice Springs. We also examined screening as an STD control strategy. With fewer than 10 men refusing to participate, these programs resulted in 88 men who had either gonorrhoea or chlamydia and at least 45 of their sexual partners being treated. We did not have the resources to determine whether the men were symptomatic at the time of the test. However, none of them had presented to the clinic for treatment. When these findings are considered in the light of routine notifications and our own local experience, it is likely that most of these people would not have been diagnosed and treated outside these programs. Health services catering to remote Aboriginal communities in other parts of Australia may wish to consider this new technology and its usefulness in comprehensive STD education and control programs. Acknowledgements The Tri-State STD/HIV Project (TSP) is jointly funded and managed by the Commonwealth Department of Health and Family Services, Territory Health Services, the South Australian Health Commission and the Western Australian Health Department. The work would not have been possible without the support of the clinical staff of Nganampa Health Council (NHC) and the Central Australian Aboriginal Congress (CAAC). Technical advice and material resources were contributed by the TSP, NHC, CAAC, Western Pathology, Alice Springs Hospital laboratory, the Australian Army, the Northern Territory AIDS/STD Unit, Roche Diagnostics, and the Institute of Medical and Veterinary Science. John Kaldor, Russell Waddell, Frank Bowden and John Boffa all commented on earlier drafts of this paper. References National Notifiable Diseases Surveillance System. Annual report of the National Notifiable Diseases Surveillance System. Commun Dis Intell 1994; 18: 518-548 . De Schryver A, Meheus A. Epidemiology of sexually transmitted diseases: the global picture. Bull World Health Organ 1990; 68 (5): 639-654. Scrimgeour D, Rowse T. Evaluation of STD control activities in central Australia. Menzies School of Health research report. Alice Springs: Menzies School of Health, 1992. Warchivker I. Variations in health care expenditure in the Alice Springs Rural District in 1993-94. Aust N Z J Public Health 1996; 20: 11-13. McDermott R, Beaver C. Models of horizontal equity in resource allocation in Aboriginal health. Aust N Z J Public Health 1996; 20: 13-15. Roongpisuthipong A, Lewis JS, Kraus SJ, Morse SA. Gonococcal urethritis diagnosed from enzyme immunoassay of urine sediment. Sex Trans Dis 1988; 15: 192-195. Schachter J, Pang F, Parks RM, et al. Use of gonozyme on urine sediment for diagnosis of gonorrhoea in males. J Clin Microbiol 1986; 23: 124-125. Moncada J, Schachter J, Shafer MA, et al. Detection of Chlamydia trachomatis in first catch urine samples from symptomatic and asymptomatic males. Sex Trans Dis 1994; 21: 8-12. Sanders JW, Hook EW, Welsh LE, et al. Evaluation of an enzyme immunoassay for detection of Chlamydia trachomatis in urine of asymptomatic men. J Clin Microbiol 1994; 32: 24-27. Jaschek G, Gaydos CA, Welsh LE, Quinn TC. Direct detection of Chlamydia trachomatis in urine specimens from symptomatic and asymptomatic men by using a rapid polymerase chain reaction assay. J Clin Microbiol 1993; 31: 1209-1212. Bianchi A, Scieux C, Brunat N, et al. An evaluation of the polymerase chain reaction Amplicor Chlamydia trachomatis in male urine and female urogenital specimens. Sex Trans Dis 1994; 21: 196-200. Bauwens JE, Clark AM, Loeffelholz MJ, et al. Diagnosis of Chlamydia trachomatis urethritis in men by polymerase chain reaction assay of first-catch urine. J Clin Microbiol 1993; 31: 3013-3016. Mahony JB, Luinstra KE, Tyndall M, et al. Multiplex PCR for detection of Chlamydia trachomatis and Neisseria gonorrhoeae in genitourinary specimens. J Clin Microbiol 1995; 33: 3049-3053. Komeda H, Deguchi T, Yamamoto H, et al. Detection of Neisseria gonorrhoeae in first-voided urine sediments from male urethritis patients by polymerase chain reaction. Kansenshogaku Zasshi 1992; 66: 1209-1212. Judson FN. Gonorrhoea. Med Clin North Am 1990; 74: 1353-1366. Lind I. The laboratory diagnosis of gonorrhoea. In: Facklam R, Laurell G, Lind I, editors. Recent developments in laboratory identification techniques. Amsterdam: Excerpta Medica, 1979. Central Australian Rural Practitioners' Association. The CARPA Standard Treatment Manual. 2nd ed. Alice Springs: Institute for Aboriginal Development, 1994. Woods ER, Galvez LM, Talis AL, Jean Emans S. First catch urine sediment for Chlamydia trachomatis and Neisseria gonorrhoeae in adolescent males with pyuria. J Adolesc Health 1991; 12: 329-334. Feng WC, Medeiros AA, Murray ES. Diagnosis of gonorrhoea in male patients by culture of uncentrifuged first-voided urine. JAMA 1977; 289: 896-898. (Received 24 June, accepted 17 Oct, 1996) Authors' details Tri-State STD/HIV Project, Alice Springs, NT. Steven J Skov, MPH, FAFPHM, Medical Officer, Tri-State STD/HIV Project. Nganampa Health Council, Alice Springs, NT. Penny Miller, MB BS, STD/HIV Program Coordinator. Wayne Hateley, STD/HIV Aboriginal Health Worker. Royal Darwin Hospital, NT. Ivan B Bastian, MB BS, MSc, Microbiology Registrar. Australian Army, Darwin, NT. Jenny Davis, Medical Technician. Central Australian Aboriginal Congress, Alice Springs, NT. Peter W Tait, MB BS, DipRACOG, FRACGP, Acting Senior Doctor. Reprints will not be available. Correspondence: Dr Penny Miller, Nganampa Health Council, PO Box 2232, Alice Springs, NT 0871. - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Steven J Skov · Penny Miller · Wayne Hateley · Ivan B Bastian · Jenny Davis · Peter W Tait

The Hobart Salt Study 1995: few meet national sodium intake target Trevor C Beard, David R Woodward, Peter J Ball, Helen Hornsby, Richard J von Witt and Terence Dwyer MJA 1997; 166: 404 For editorial comment see Beilin Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Statistical analysis - Results - Sodium and potassium excretion - Discretionary use of salt - Discussion - Public health implications - Conclusion - Acknowledgements - References - Authors' details - - ©MJA1997 Abstract Objective: To estimate 24-hour sodium and potassium excretion in an urban Australian population. Design and setting: Cross-sectional survey of an urban population in Hobart, Tasmania, in 1995. Participants: Systematic sample (87 men, 107 women) from the Commonwealth Electoral Roll of people aged 18-70 years on 30 June 1995 whose residential address was within 10 km of the Hobart General Post Office. Main outcome measure: Conformity with the national target for sodium intake for the year 2000 of ≤100 mmol/day. Results: The target was met by 6% of men and 36% of women. This difference between the sexes was significant ( P < 0.001), while differences between age groups and socioeconomic levels were not significant. Conclusion: Our findings confirm the low level of conformity with the national sodium target reported by the handful of Australian studies over the past decade. Given the major community costs associated with hypertension, our results highlight the need for effective and properly monitored action to reduce sodium intakes. MJA 1997; 166: 404-407 Introduction Many health problems are associated with the current sodium intake of people in Western societies.1 In 1988, an Australian target for a lower sodium intake was set for the express purpose of reducing the prevalence of hypertension.2 Although other factors, such as excess body weight, inadequate exercise, excess alcohol, low dietary potassium and "psychological influences", may contribute to hypertension,3 Australia's national target for sodium intake (≤100 mmol/day)2 is accepted internationally.4-6 Further, it is supported by the discovery that the usual human salt intake in Western diets induces hypertension in chimpanzees, and that this is reversed when they return to their natural diet.7 The effect of low dietary potassium on health has received less attention, but there is good evidence that potassium intake should at least equal sodium intake in molar units.8,9 Potassium predominates in unsalted foods because it is the major intracellular cation in the living tissues of both plants and animals. Thus, virtually all the natural foods available to mammals have a molar sodium to potassium ratio of less than 1.0. The human body must have evolved on this dietary ratio; its inversion is recent in phylogenetic terms, unnecessary and probably unsafe.8,9 Published data on current intakes of sodium and potassium among Australians are very few, and usually based on small samples10-12 We report electrolyte excretion data obtained from 194 Hobart residents for a behavioural study in 1995. Our estimates are based on 24-hour excretion of these electrolytes in the urine (widely accepted as the preferred method of assessment of intake).13,14 Methods People aged 18-70 years on 30 June 1995 and residing within 10 km of the Hobart General Post Office were selected from the Commonwealth Electoral Roll (revised to February 1995) as follows. Every 500th person on the roll was selected for contact or, if ineligible, replaced by the next eligible person. A letter inviting participation was mailed to each person, outlining the study (including the need to attend for interview and to provide a 24-hour urine sample) and enclosing a reply-paid envelope. Those failing to reply were sent a second letter two weeks later, followed, if necessary, by a telephone call within a further 10 days. Unpredictable variability in sodium excretion (a confounder in the behavioural study) was reduced by excluding volunteers with serious intercurrent illness, pregnancy, breast-feeding or use of potassium supplements, diuretics or other drugs likely to affect sodium excretion. We estimated socioeconomic status by the postcode of the participant's address, using the Index of Relative Socioeconomic Disadvantage (IRSD);15 data for specific postcodes were supplied by the Australian Bureau of Statistics. Suburbs whose postcodes had an IRSD ≤ 1000 (the national mean score) were classified as "lower socio economic status", and those with an IRSD ≥ 1000 as "higher socioeconomic status". Two subjects listed a GPO box address and were not assigned a socio economic status rating. At interview, we collected demographic and anthropometric data and a short medical history. Participants completed a food-frequency questionnaire and answered behavioural and cognitive questions, which will be reported elsewhere. Each participant received detailed verbal and written instructions on how to make a complete 24-hour collection of urine; all were asked to collect urine on weekdays, and women of reproductive age were asked to avoid collection during the premenstrual week, when sodium retention may occur.16 Participants collected urine in 2 L plastic containers containing 20 mL of 6 molar hydrochloric acid and returned them promptly. Urine volume was estimated by weighing. For 82 of the 194 samples the estimated volume was adjusted to 24 hours because of longer or shorter actual collection times; the maximum adjustment was 175 minutes over the 24 hours (12.2%), and only five adjustments exceeded 5%. The samples, identified only by code numbers, were diluted with neutral pH buffer and analysed for sodium and potassium by ion-selective electrodes on a Kodak Ektachem 750 XRC analyser (Johnson & Johnson Clinical Diagnostics, Rochester, NY, USA) and, for creatinine, by the Ektachem method also. Laboratory results were sent to those participants who requested them. A duplicate of every tenth sample was sent for analysis under a different code number for quality assurance. We calculated imprecision of laboratory measurements from the differences between results for duplicate samples using the formula published for the Intersalt study.17 The coefficients of variation for laboratory imprecision were 0.6% for sodium, 1.1% for potassium and 5.4% for creatinine. The protocol was approved by the University of Tasmania Committee on Ethical Aspects of Human Experimentation, and all subjects gave written informed consent. Statistical analysis We used SPSS18 to analyse the data; P< 0.05 was used as the criterion of statistical significance. Differences between sexes, age groups and socioeconomic status levels were assessed by t tests (for mean sodium and potassium excretion rates) and by chi-squared tests (for compliance with targets for sodium and sodium to potassium ratio). Results Of 619 individuals originally selected, 167 (27%) were uncontactable despite active follow-up, 80 (13%) were ineligible because they had moved out of the target area, 151 (24%) declined to take part, 18 (3%) were eliminated by our exclusion criteria (nine for medications, five for illness, and four for pregnancy or lactation), and nine participated incompletely. The remaining 194 (31% of the initial sample, or 52% of those known to be eligible) were interviewed and provided a 24-hour urine collection. Box 1 (below) compares sociodemographic characteristics for these 194 participants with those of the other 425 people originally selected. The two groups had a similar sex distribution, but participants were significantly older and had higher socioeconomic status. For participants, the sex ratio was similar in both age divisions (43% men in the 18-44 years group and 46% men in the 45-70 years group), and in both socioeconomic groups (47% and 44% men in the lower and higher socioeconomic status groups, respectively). While we do not have birthplace data for the non-participants, most participants were born in Australia (83%) or in the United Kingdom or Ireland (12%). Sodium and potassium excretion Twenty-four-hour sodium excretion was greater in men (range, 39-337 mmol) than in women (26-241 mmol), and the mean sodium intake (as reflected by this excretion rate) was 52 mmol higher in men than in women, a highly significant difference (P< 0.001). Only 6% of men, compared with 36% of women, met the Australian national target (≤ 100 mmol/day), represented by the vertical line in the Figure, and this difference was also significant at P< 0.001. Differences between age groups and socioeconomic status groups were not significant at the P< 0.05 level (Box 2, below). The mean potassium intake in men was 9 mmol higher than in women (P = 0.03), but differences between age groups and socioeconomic status groups were not significant (Box 2, above). Only 5% of men and 19% of women met the recommendation8,9 that the sodium to potassium ratio should not exceed 1.0 (diagonal line in the Figure); this sex difference was significant (P = 0.002). Differences were not statistically significant between younger and older participants (P = 0.33), and were on the margin of significance for socioeconomic status levels (P = 0.05). Discretionary use of salt Most of our 194 participants claimed that they never or rarely added salt at the table (51% of men and 73% of women), and that they never or rarely cooked with salt (54% of men and 61% of women). Compliers and non-compliers with the sodium target gave similar answers about the use of salt: 66% of compliers and 62% of non-compliers rarely or never added salt at the table, and 57% of compliers and 58% of non-compliers rarely or never cooked with salt. Discussion Despite our relatively low response rate, Box 1 shows that our participants had a similar sex ratio to that of a systematic sample from the Hobart electoral roll, and we found that sex differences in electrolyte excretion were significant. Although our sample was biased in terms of age and socioeconomic status, the effect of age and socioeconomic status on electrolyte excretion in the participants barely reached significance (Box 2), and hence these biases are unlikely to have influenced our findings. If the participants were unrepresentative in some other way -- more health-conscious, for example -- our data could underestimate sodium excretion and overestimate compliance with the sodium target. It is difficult to be certain of the completeness of 24-hour urine collections. Para-aminobenzoic acid has been used as a marker in overseas studies,19 but is not approved for use with healthy volunteers in Australia. Creatinine excretion is a customary indicator of completeness, but no standard cut-off points exist.19 As both undercollection and overcollection could have affected our results, we repeated the t-test analyses of Box 2 after excluding subjects whose creatinine outputs were in the lowest and highest 2.5% for men and women. For both sodium and potassium the changes in means and standard deviations were negligible, indicating no serious problem with outliers. Moreover, the range of excretion rates of each electrolyte in each sex remained unaltered. Accuracy and imprecision of assays are also important determinants of data quality. As reported in our Methods, duplicate assays indicated acceptable imprecision -- the laboratory is a participant in the Royal College of Pathologists of Australasia-Australian Association of Clinical Biochemists Quality Assurance Scheme and is accredited by the National Association of Testing Authorities. Few other Australian studies have been reported. In one, estimates based on food-frequency questionnaires were somewhat lower than ours,12 but urinary excretion is considered a more valid indicator of intakes.13,14 A Hobart study in 1989, with a similar protocol for sample selection and urine collection,10 found mean sodium and potassium excretion rates in men of 160 mmol/day and 77 mmol/day, respectively, compared with 124 mmol/day and 66 mmol/day in women. In Sydney, in 1992, Notowidjojo and Truswell11 found mean sodium and potassium excretion rates of 164 mmol/day and 74 mmol/day in men and 133 mmol/day and 66 mmol/day in women. These two studies support our conclusion that average intakes in Australia -- especially among men -- are substantially above the national target. Public health implications Meta-analysis by Law et al. indicates that a 50 mmol decrease in community sodium intake could reduce mortality from heart disease by 16% and from stroke by 22%.20 The annual cost to Australia of heart disease, stroke and hypertension was recently estimated at $1198 million, $666 million and $546 million, respectively.21 If a lower salt intake reduced prevalence as much as it reduced mortality, the saving from 16% less heart disease and 22% less stroke and hypertension would be $458 million annually, with added savings from reduced prevalence of other conditions.1 In the United Kingdom the complete elimination of table salt and cooking salt would reduce mean sodium intake by only about 15%.22 This figure might be even lower in Australia, as this and other studies show that most people already avoid adding salt to their food.23,24 The main source of dietary sodium -- at least 75% of the total -- is processed foods, and a major reduction depends on changing their composition.21 Government initiatives have been limited to recommending a lower salt content in processed foods,25 setting a national target for sodium intake of ≤100 mmol/day,2 and publishing the dietary guideline Choose low salt foods and use salt sparingly.26 Food manufacturers have made some commendable initiatives, but they depend on consumer demand, and little has been done to inform the public about the national target for sodium intake. Although some low-salt processed foods are available and labelled in accordance with the food regulations, shoppers receive little specific advice or encouragement to reduce their sodium intake by choosing them. Conclusion By setting a national sodium-intake target, Australian health authorities have accepted that excessive dietary sodium is an important health issue, with significant morbidity, mortality and economic costs. Our results indicate the need for an active campaign to promote and monitor the nation's sodium target effectively. Acknowledgements This study was carried out with an educational grant from the National Heart Foundation of Australia, and financial assistance towards the purchase of computer equipment was received from Sizzler Restaurants and from Salt Skip Incorporated. We are indebted to Leigh Blizzard, statistician at the Menzies Centre, for statistical advice. References Antonios TFT, MacGregor GA. Deleterious effects of salt intake other than effects on blood pressure. Clin Exp Pharmacol Physiol 1995; 22: 180-184. Health Targets and Implementation (Health For All) Committee. Health for all Australians. Canberra: AGPS, 1988: 38. WHO/ISH Statement Committee. Prevention of hypertension and associated cardiovascular disease: a 1995 statement. Clin Exper Hypertension 1996; 18: 581-593. National Research Council. Committee on diet and health. Implications for reducing chronic disease risk. Washington DC: National Academy Press, 1989: 16-17. World Health Organization. Diet, nutrition, and the prevention of chronic diseases. WHO Technical Report No. 797. Geneva: WHO, 1990: 61. Committee on Medical Aspects of Food Policy. Nutritional aspects of cardiovascular disease. Department of Health and Social Security. Report on health and social subjects No. 46. London: HMSO, 1994: 138. Denton D, Weisinger R, Mundy NI, et al. The effect of increased salt intake on blood pressure of chimpanzees. Nature Med 1995; 1: 1009-1016. Truswell AS. Potassium. In: Truswell AS, Dreosti IE, English RM, et al., editors. Recommended nutrient intakes: Australian papers. Sydney: Australian Professional Publications, 1990: 191-198. Stamler J, Rose G, Stamler R, et al. Intersalt study findings: public health and medical care implications. Hypertension 1989; 14: 570-577. Beard TC, Eickhoff R, Mejglo ZA, et al. Population-based survey of human sodium and potassium excretion. Clin Exp Pharmacol Physiol 1992; 19: 327-330. Notowidjojo L, Truswell AS. Urinary sodium and potassium in a sample of healthy adults in Sydney, Australia. Asia Pacific J Clin Nutr 1993; 2: 25-33. Baghurst KI, Crawford D, Worsley A, et al. The Victorian nutrition survey: a profile of the energy, macronutrient and sodium intakes of the population. Community Health Studies 1988; 12: 42-54. Caggiula AW, Wing RR, Nowalk MP, et al. The measurement of sodium and potassium intake. Am J Clin Nutr 1985; 42: 391-398. Hunter D. Biochemical indicators of dietary intake. In: Willett W, editor. Nutritional epidemiology. New York: Oxford University Press, 1990: 143-216. Australian Bureau of Statistics. Socio-economic indexes for areas. Canberra: ABS, 1990. MacGregor GA, Markandu ND, Roulston JE, et al. Is idiopathic oedema idiopathic? Lancet 1979; 1: 397-400. Intersalt Cooperative Research Group. Intersalt: an international study of electrolyte excretion and blood pressure. Results for 24 hour urinary sodium and potassium excretion. BMJ 1988; 297: 319-328. SPSS for Windows, release 6.1 [computer program]. Chicago: SPSS Inc, 1994. Bingham SA, Cummings JH. The use of creatinine output as a check on the completeness of 24-hour urine collections. Hum Nutr Clin Nutr 1985; 39C: 343-353. Law MR, Frost CD, Wald MJ. By how much does dietary salt lower blood pressure? III. Analysis of data from trials of salt reduction. BMJ 1991; 302: 819-823. National Heart Foundation of Australia. Heart and stroke facts report. Canberra: The Foundation, 1995. James WPT, Ralph A, Sanchez-Castillo CP. The dominance of salt in manufactured food in the sodium intake of affluent societies. Lancet 1987; 1: 426-429. Bennett SA, Magnus P. Trends in cardiovascular risk factors in Australia. Med J Aust 1994; 161: 519-527. Thomson A, Rundle S, Singh BB, et al. Regional differences in cardiovascular risk factor prevalence in Tasmania: are they consistent with the increased cardiovascular mortality? Aust N Z J Med 1995; 25: 290-296. National Health and Medical Research Council. Report of the working party on sodium in the Australian diet. Canberra: AGPS, 1984: 4. National Health and Medical Research Council. Dietary guidelines for Australians. Canberra: AGPS, 1992: 70-83. (Received 24 Jun, accepted 4 Nov, 1996) Authors' details Menzies Centre for Population Health Research, University of Tasmania, Hobart, TAS. Trevor C Beard, OBE, MB BChir, MPH, Senior Research Fellow; Helen Hornsby, BA(Hons), Research Assistant; Terence Dwyer, MD, MPH, Director. Division of Biochemistry, University of Tasmania, Hobart, TAS. David R Woodward, PhD, Senior Lecturer. Department of Psychology, University of Tasmania, Hobart, TAS. Peter J Ball, BSc, MA, Senior Lecturer. Department of Clinical Chemistry, Royal Hobart Hospital, Hobart, TAS. Richard J von Witt, FRCPath, FRCPA, Director. Reprints: Dr T C Beard, Menzies Centre for Population Health Research, 17 Liverpool Street, Hobart, TAS 7000. ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Trevor C Beard · David R Woodward · Peter J Ball · Helen Hornsby · Terence Dwyer

Evaluation of sexual health services within Australia and New Zealand Caron Marks, Robin L Tideman and Adrian Mindel MJA 1997; 166: 348-352 For comment see Fairley Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Authors' details - Figure 1 - Figure 2 - - ©MJA1997 Abstract Objective: To examine and compare specialised services for patients with sexually transmitted diseases (STDs) in Australia and New Zealand. Design: Postal questionnaire survey. Participants and Setting: All STD facilities in Australia and New Zealand in 1993. Main Outcome Measures: Patient numbers and demography; staffing levels; the role of nurses; diagnostic and treatment protocols; contact-tracing policies; and the availability of specialist medical services and community and education programs. Results: 83 of 100 clinics responded; 52 were urban, 21 rural, and nine remote. 95% were open to men and women. Staffing levels were similar in Australia and New Zealand and there was considerable consistency in diagnostic techniques and treatment among clinics. Australian clinics more often used ciprofloxacin or ceftriaxone as the treatment of first choice for gonorrhoea; New Zealand clinics were more likely to test for Chlamydia using direct immunofluorescence; and Australian clinics were more likely to test for hepatitis A and offer hepatitis B vaccination to a broader range of patients. 88% of clinics always traced contacts for gonorrhoea, 86% for syphilis and 77% for Chlamydia . 98% of clinics offered HIV test counselling, and 78% STD health education. Conclusions: The number of sexual health services has increased over the past decade. Other improvements include most clinics being open to both men and women, and consistency in the diagnosis, treatment and contact tracing of STDs. However, given the lack of adequate comparative data and the variable quality of national surveillance data, it is difficult to determine whether current facilities are meeting service needs. MJA 1997; 166: 348-352 Introduction The control of sexually transmitted diseases (STDs) depends on health promotion, education, the provision of adequate facilities for the diagnosis, treatment and contact tracing of STDs, and ongoing research.1 One of the more comprehensive national STD services (involving more than 200 standardised clinics) is in the United Kingdom.2,3 By contrast, Australia currently has a fragmented STD control system in which each State and Territory works independently and with different health policies. There are no nationally agreed guidelines for the diagnosis, treatment and tracing of contacts of patients with STDs,4 availability of different tests varies across the continent, and treatment protocols may vary according to antibiotic resistance patterns and financial constraints. A 1983 survey of public STD facilities throughout Australia found that almost all clinics were located in major cities, leaving large areas of rural Australia unserviced by public clinics.5 Other deficiencies identified included inadequate opening times, lack of facilities in some clinics for treating both men and women, insufficient staff, inadequate contact tracing, limited use of facilities for teaching purposes, and inadequate maintenance of their role as reference centres for other practitioners and agencies. This survey included all 20 public STD facilities Australia-wide, and concluded that these facilities were "inadequate to meet the needs of the population".5 Over the past decade there have been many changes to sexual health care, including more clinics and better training for staff. Consequently, we felt that it was timely to establish what STD services were available from public and private STD clinics and Family Planning Clinics (FPCs); whether STD clinical services were adequately staffed; to determine the range of diagnostic, treatment, and contact-tracing services; and whether clinics were providing the community with education, counselling and other specialist services. Finally, we compared services in Australia and New Zealand and noted geographic differences in the provision of services within Australia. Methods In 1993 we identified all STD treatment facilities in Australia and New Zealand. These included all known public and private sexual health clinics, and the main Family Planning Clinic (FPC) in each State. Most facilities were identified through the National Venereology Council of Australia and the Family Planning Association of New South Wales, with the remainder found when clinics identified centres in their area which had been overlooked. A questionnaire and prepaid addressed envelope were posted to the director (senior doctor or nurse) of each clinic. The 65-item questionnaire sought information about the geographic location and physical structure of clinics, as well as staffing, diagnosis, treatment and contact tracing for the various STDs, specialist medical services, and community and educational programs run by the facility. Non-respondents were sent a second questionnaire two months after the first. Statistical analysis The results were analysed using the Statistical Package for the Social Sciences (SPSS).6 Descriptive statistics, frequency distributions, χ2 and Fisher's exact test were used. There was no weighting of the data by size of clinic. Chi-square tests, when used to compare therapies for the various STDs, involve all treatments, ranging from "most commonly used" to those "never used". When reporting significant differences the χ2 takes into account all these modalities. However, the figures reported show only a description of where the differences lie. The rural/remote areas classification system was used to classify Australian facilities into rural and remote areas by means of postcodes,7 while the New Zealand Yearbook was used to classify those in New Zealand.8 Results We identified 101 STD facilities, one of which had closed down. From the remaining 100 clinics, 83 questionnaires were returned (72 on the first mailout and an additional 11 on the second). Geographic distribution and type of facility Fifty-six clinics were in Australia and 27 were in New Zealand. Sixty-three per cent were in inner-city and suburban areas, 26% in rural areas and 11% in remote areas (Box 1). Seventy-nine clinics (95%) were public and four (5%) were private. There were 71 STD clinics and five FPCs. One private facility identified itself as a specialist venereology practice, and three as general practices specialising in STDs and HIV. The remaining three clinics identified themselves as "other". Seventy-nine clinics (95%) were open to both men and women. Staffing Box 2 shows that the median number of patients seen per year decreased as the facilities became more remote. Clinics in Australia saw a greater median number of patients per year and had more doctors, nurses, laboratory and clerical staff than those in New Zealand. However, the only significant difference was for full-time equivalent clerical staff, with a median of 1 (range, 0-4.3) for Australia, compared with 0 (range, 0-2.4) for New Zealand (P = 0.002). The most common duties of nurses at STD facilities included history taking, clinical examination and testing for STDs. Only 26% of clinics allowed nurses to prescribe treatment; more nurses in rural and remote areas were allowed to prescribe treatment than those in urban areas (36% v. 16%), but this difference was not significant. Nurses took histories "sometimes" (options were "always", "sometimes" and "never") in over 80% of clinics in New South Wales, compared with 39% in Victoria (P = 0.02), and examined patients at 70% of NSW clinics, compared with 22% in Victoria (P = 0.02). There were no significant differences in nursing duties between New Zealand and NSW. However, comparing New Zealand with Victoria showed that New Zealand nurses were more likely to take histories (P = 0.003), examine patients (P = 0.005), and test patients for STDs (P = 0.002). Diagnosis and treatment Gonorrhoea: Eighty-one clinics (99%) used culture, and 77 (94%) used Gram stain to diagnose gonorrhoea. The three most common treatments for gonorrhoea were amoxycillin plus probenecid, ciprofloxacin, and ceftriaxone, used in 63%, 24% and 12% of clinics, respectively (Box 3). New Zealand clinics were more likely than Australian clinics to use amoxycillin plus probenecid as first-line therapy for gonorrhoea (93% v. 49%; P = 0.01). Urban clinics in both Australia and New Zealand were more likely to use ciprofloxacin than rural and remote clinics (51% v. 21%; P = 0.02). Syphilis: Forty-seven clinics (57%) used dark-ground microscopy for diagnosing primary syphilis. For screening, 61 (74%) used the rapid plasma reagin (RPR) test, 58 (71%) the Treponema pallidum haemagglutination antibody (TPHA) test, and 25 (31%) the Ven ereal Disease Research Laboratory (VDRL) test. Fifty Australian clinics (91%), compared with 11 New Zealand clinics (41%), used the RPR test for screening (P < 0.001). The fluorescent treponemal antibody test (FTA) was used by 61 (75%) clinics to confirm the diagnosis. Procaine and benzathine penicillins were the first-choice treatments in all facilities. Chlamydia and non-gonococcal urethritis: Chlamydia was most commonly diagnosed by direct immuno fluorescence (DIF), which was used by 44 clinics (54%), followed by: enzyme immunoassay (EIA) from swabs, 39 clinics (48%); culture from swabs, 35 clinics (43%); and EIA from urine, 10 clinics (12%). Australian clinics were more likely to use culture to diagnose chlamydial infection than New Zealand clinics (58% v. 11%; P < 0.001), while New Zealand clinics were more likely to use DIF than Australian clinics (74% v. 44%; P = 0.01). Urban centres were significantly more likely to use culture to diagnose Chlamydia than rural and remote centres (58% v. 17%; P < 0.001). Most clinics used doxycycline as first-line treatment for Chlamydia and non-gonococcal urethritis (92% and 91%, respectively). Genital herpes: Herpes simplex virus (HSV) was diagnosed by viral culture (79 clinics [96%]), EIA (16 clinics [20%]), and serological testing (10 clinics [12%]). Acyclovir was used to treat primary HSV infections by 79 clinics (98%), for long term suppression by 70 clinics (86%), and for recurrences of HSV infection by 58 clinics (72%). Human immunodeficiency virus (HIV): All the clinics surveyed routinely offered counselling and voluntary HIV testing to all persons considered to be at risk of HIV infection. Fifty-two clinics (64%) had facilities to manage HIV- positive patients. Forty-one clinics (51%) provided antiretroviral therapy and prophylaxis and treatment of opportunistic infections. Genital warts: Cryotherapy was the first-line treatment for human papillomavirus infection in 55 clinics (69%), and podophyllin was the second most common treatment option, used in 17 clinics (21%). Australian clinics were more likely to use podophyllin than New Zealand clinics (16/53 [30%] v. 3/27 [11%]; P = 0.03). Trichomoniasis and bacterial vaginosis: To diagnose trichomoniasis, wet-film microscopy was the most common technique, used in 67 clinics (83%), while culture was used by 39 clinics (48%). Gram staining was the most common diagnostic technique for identifying bacterial vaginosis (74 clinics [93%]). Alternative diagnostic techniques used included culture to identify Gardnerella vaginalis and other anaerobes (56 clinics [70%]), vaginal pH testing (44 clinics [55%]), and the potassium hydroxide test (which identifies volatile amines) (41 clinics [51%]). Most clinics used metronidazole to treat trichomoniasis (53/80 [66%]) and bacterial vaginosis (50/79 [63%]). Viral hepatitis: Forty-four clinics (55%) offered antibody testing for hepatitis A and 79 (98%) for hepatitis C. Australian clinics were significantly more likely to offer antibody testing for hepatitis A than New Zealand clinics (36/54 [67%] v. 8/26 [31%]; P = 0.003). When screening for hepatitis B infection, 65 clinics (81%) meas ured surface antigen (HBsAg), 57 (71%) measured core antibody (HBcAb), and 48 (60%) measured surface antibody (HBsAb). Figure 1 shows clinic policies for hepatitis B vaccination. Vaccination was recommended for health care workers by 52/53 (98%) Australian clinics, compared with 19/27 clinics (70%) in New Zealand (P < 0.001); for heterosexuals with multiple partners, these figures were 44/53 (83%) and 15/27 (56%), respectively (P = 0.01); and for intravenous drug users (IVDUs), 52/53 (98%) and 21/27 (78%), respectively (P = 0.002). Contact tracing Seventy-one clinics (87%) offered contact tracing for patients with STDs. Many centres employed multiple techniques. In 67 clinics (94%), staff negotiated with patients to advise their own contacts, 53 clinics (75%) used face-to-face discussions between contacts and clinic staff, 45 (63%) had staff visit contacts at home, and 38 (54%) traced contacts by phone. Twenty-one of the 71 clinics (30%) employed specially trained contact tracers. Doctors were involved in contact tracing in 22 clinics (28%), counsellors in 23 (32%), and nurses in 44 (62%). Patients were encouraged to inform their own contacts in 28 clinics (39%). All 21 clinics in NSW stated that they undertook contact tracing, compared with 9/13 (69%) clinics in Victoria (P = 0.01), and NSW clinics were significantly more likely to involve counsellors in contact tracing than Victorian clinics (62% v. 8%; P = 0.002). There were a number of differences in contact-tracing policies between Australia and New Zealand. Australian facilities were more likely than New Zealand clinics to involve doctors (22/55 [40%] v. 1/27 [4%]; P = 0.001), less likely to trace contacts by telephone (21/55 [38%] v. 18/27 [67%]; P = 0.02), and less likely to trace contacts by having staff visit them (22/55 [40%] v. 23/27 [85%]; P < 0.001). Box 4 summarises the contact-tracing practices for each STD. Most clinics always traced contacts of patients with gonorrhoea, syphilis, Chlamydia , HIV and trichomoniasis. Only one of the five FPCs (20%) provided contact tracing, compared with 65 of 66 (98%) sexual health clinics (Fisher's exact test, P < 0.0005). Additional services provided by STD clinics The facilities surveyed offered a range of additional services. Eighty-one facilities (98%) offered counselling before and after HIV testing, 78 (95%) functioned as a referral service for further specialist counselling, 68 (84%) offered family planning advice, and 48 (59%) offered relationship counselling. Other services are outlined in Figure 2. Sixty-eight (82%) of the responding clinics offered education programs to other health professionals, schools or youth groups, while 46 (55%) offered some form of higher education/university courses. Discussion Our findings show that the number of STD facilities in Australia increased considerably over the past decade, and that facilities in New Zealand and Australia were broadly comparable (although, in Australia, there was still a marked urban predominance of clinics). Other improvements were that most clinics were open to men and women, and offered a wide range of teaching and other special services. Relative to the 1983 survey of Australian STD services by Bradford and Philpot,5 we found an increase in the number of nurses and doctors, while the number of patients seen annually was similar. However, over the past decade clinics have become more involved in managing patients with complex medical problems, including HIV, hepatitis B and C, disseminated herpes simplex virus infection, and cervical intraepithelial neoplasia.4,9 Increased availability of services does not necessarily lead to improvement in the sexual health of the community. The best measure of improvement is a reduction in the incidence of sexually transmitted diseases. In Australia, disease patterns have been difficult to in terpret because the collection of epidemiological data for most STDs (with the exception of gonorrhoea) from the States and Territories is uneven.4 None the less, there is considerable evidence to suggest that there has been a dramatic reduction in reported cases of gonorrhoea, syphilis and chlamydial infections since 1981,10-12 with the most marked improvements in the large metropolitan centres. By contrast, the incidence of gonorrhoea, syphilis, Chlamydia and donovanosis remained extremely high in many rural Aboriginal communities, particularly in the Northern Territory, far north Queensland, and the Pilbara and Kimberley regions of Western Australia.13-15 These areas all have a limited number and quality of sexual health facilities, and improvements in clinical services and intervention programs are urgently needed. Our findings show considerable consistency in diagnosis and treatment of STDs throughout Australia and also between Australia and New Zealand, with most facilities following the diagnostic and treatment guidelines produced by the United States Centers for Disease Control (CDC)16 or those of the Venereology Society of Victoria.17 However, we did identify some differences between Australia and New Zealand in the treatment of first choice for gonorrhoea, the method of detecting chlamydial infection, and in the likelihood that hepatitis A tests would be requested. There were also differing policies on hepatitis B vaccination and on tracing contacts of patients with STDs. Varying patterns of antibiotic resistance in strains of the organism that causes gonorrhoea (penicillinase-producing Neisseria gonorrhoeae ) were more common in Australia, particularly along the east coast,18 than in New Zealand, and resistance to quinolones occurs in strains infecting a sizeable minority of travellers from the Philippines and neighbouring countries;19 this may explain the difference in antibiotic treatment. Other factors contributing to the differences in practice include local availability of diagnostic tests, variation in populations attending clinics (travellers,20,21 sex-industry workers22,23 and homosexual men24-26 ) and local variations in clinical practice. The differences in hepatitis A testing policy and hepatitis B vaccination policy are intriguing, and may include differing financial arrangements between the clinical services in the two countries, availability of testing and vaccination from other sources (in particular, the recommendation for universal HBV vaccination in New Zealand),27 and differing populations28,29 and perceptions of risk.30 Differences in contact-tracing policies probably reflect availability of staff, local working practices, or variation in the understanding of contact tracing. There are a few minor differences between urban clinics and those in rural and remote settings, with a greater proportion of urban clinics using ciprofloxacin to treat gonorrhoea, using culture to diagnose Chlamydia , and requesting hepatitis A testing. This also reflects differences in the population groups attending different clinics (urban centres attract a higher proportion of overseas travellers, sex workers and homosexual and bisexual men than rural and remote centres), antibiotic sensitivities and local availability of tests. Overall, the availability of contact-tracing services was excellent. However, it is of some concern that 4% of clinics never and 9% only sometimes traced contacts for gonorrhoea, 8% never traced contacts for syphilis and 2% never traced contacts for Chlamydia . Although we surveyed only five FPCs, our finding that only one of these five provided contact tracing is of concern, particularly with Chlamydia , which is often diagnosed within these facilities.31 Barriers to contact-tracing services within FPCs should be explored and solutions considered. One possible solution would be to encourage closer links between sexual health and family planning services. Our findings in this survey should be of assistance in future sexual health service planning. In addition, the remarkable consistency in the diagnosis, treatment and contact tracing of STDs in Australia and New Zealand should encourage the development of national guidelines. Acknowledgements We thank Professor G Berry and Associate Professor B Donovan for their assistance with this manuscript. References Adler MW. Sexually transmitted diseases. In: Holland WW, Detels R, Knox G, editors. Oxford textbook of public health. Vol. 21. 2nd Ed. Oxford: Oxford University Press, 1991: 345-357. Bingham JS. Genitourinary medicine should remain a separate specialty. Genitourin Med 1996; 27: 312. Adler MW, Belsey EM, O'Connor BH, et al. Facilities and diagnostic criteria in sexually transmitted disease clinics in England and Wales. Br J Vener Dis 1978; 54: 2-9. Mulhall BP, Hart G, Harcourt C. Sexually transmitted diseases in Australia: a decade in change. Epidemiology and surveillance. Ann Acad Med Singapore 1995; 24: 569-578. Bradford DL, Philpot CR. A survey of sexually transmitted disease centres in Australia. Br J Vener Dis 1983; 59: 330-334. SPSS: Statistical package for the social sciences [computer program], version 7.0. Chicago, Ill: SPSS Inc, 1995. Rural/remote areas classification. Canberra: Department of Human Services and Health, 1994. New Zealand Official Yearbook 1993. 96th Ed. Wellington: New Zealand Department of Statistics, 1993. Donovan B, Finlayson RJ, Mutimer K, et al. HIV infection in sexually transmissible disease practice in Sydney: the effects of legislation, public education and changing clinical spectrum. Int J STD AIDS 1990; 1: 21-27. The Australian gonococcal surveillance programme. The incidence of gonorrhoea and the antibiotic sensitivity of gonococci in Australia, 1981-1991. Genitourin Med 1993; 69: 364-369. Hart G. STD epidemiology in Australasia; Syphilis and gonorrhoea. Venereology 1992; 5: 115-120. Garland SM, Gertig DM, McInnes JA. Genital Chlamydia trachomatis infection in Australia. Med J Aust 1993; 159: 90-96. Annual report of the national notifiable diseases surveillance system, 1992 - part 2. Syphilis. Commun Dis Intell 1993; 17(22): 507-508. Bowden FJ. Surveillance of sexually transmitted diseases in the Northern Territory of Australia. Venereology , 1995; 8(1): 21-25. Main J, Patel A, Bowden FJ. Surveillance of donovanosis in the Northern Territory. Venereology 1995: 8: 16-19. sexually transmitted diseases treatment guidelines. Centers for Disease Control and Prevention. MMWR Morb Mortal Wkly Rep 1993; 42(RR-14): 1-102. Management guidelines for sexually transmissible diseases and genital infections. 4th ed. Melbourne: Venereology Society of Victoria, 1995. Anonymous. The incidence of gonorrhoea and the antibiotic sensitivity of gonococci in Australia, 1981-1991 . The Australian Gonococcal Surveillance Programme. Genitourin Med 1993; 69(5): 364-369. Tapsall JW, Schultz TR, Philip EA. Characteristics of Neisseria gonorrhoeae isolated in Australia showing decreased sensitivity to quinolone antibiotics. Pathology 1992; 24: 27-31. Mulhall BP, Hu M, Thompson M, et al. Planned sexual behaviour of young Australian visitors to Thailand. Med J Aust 1993; 158: 530-535. Mulhall BP. Sexually transmissible diseases and travel. Br Med Bull 1993; 49(2): 394-411. O'Connor CC, Berry G, Rohrsheim R, Donovan B. Sexual health and use of condoms among local and international sex workers in Sydney. Genitourin Med 1996; 72: 47-51. Philpot CR, Harcourt JM, Edwards JM. A survey of female prostitutes at risk of HIV infection and other sexually transmissible diseases. Genitourin Med 1991; 67: 384-388. Rowbottom JH, Tapsall JW, Plummer DC, et al. An outbreak of a penicillin-sensitive strain of gonorrhoea in Sydney men. Genitourin Med 1994; 70: 196-199. Forsyth JRL, Sherrard J, Traynor P. Resurgent gonorrhoea in homosexual men [letter]. Lancet 1990; 336: 878. McNulty A. Anorectal gonorrhoea revisited. Venereol 1993; 6(4): 109-111. Goldwater PN. History of hepatitis B vaccination in New Zealand: lessons for Australia? Aust J Pub Health 1993; 17: 221-225. Stewart T, Crofts N. An outbreak of hepatitis A among homosexual men in Melbourne. Med J Aust 1993; 158: 519-521. Stokes ML. Infectious diseases: hepatitis A survey results. NSW Public Health Bull 1992; 3: 7-12. Anderson B, Bodsworth NJ, Rohrsheim R, Donovan B. Hepatitis B virus infection and vaccination status of high risk people in Sydney: 1982 and 1991. Med J Aust 1994; 161: 368-371. Garland SM, Gertig DM, McInnes JA. Genital Chlamydia trachomatis infection in Australia. Med J Aust 1993, 159: 90-96. (Received 9 Apr, accepted 1 Nov, 1996) Authors' details Academic Unit of Sexual Health Medicine, Sydney Hospital, Sydney, NSW. Caron Marks, BSc, MA, Research Assistant; Robin L Tideman, MB BS, Clinical Research Coordinator; Adrian Mindel, FRACP, MD, Professor of Sexual Health Medicine. Reprints: Ms C Marks, Academic Unit in Sexual Health Medicine, Sydney Hospital, GPO Box 1614, Sydney, NSW 2001. E-mail: cmarks AT extro.ucc.su.oz.au - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Caron Marks · Robin L Tideman · Adrian Mindel

Hepatitis C transmission on the north coast of New South Wales: explaining the unexplained Tim J Sladden, Alan R Hickey, Therese M Dunn and John R Beard MJA 1997; 166: 290 For comment see Wodak Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Exposures - Transmission to sexual partners and offspring - Discussion - Acknowledgements - References - Authors' details - - ©MJA1997 Abstract Objective: To determine the routes of hepatitis C virus (HCV) transmission in an Australian community. Design: Questionnaire-based, cross-sectional survey of notified HCV cases. Subjects and setting: All cases notified to the New South Wales North Coast Public Health Unit between 1 January 1993 and 30 September 1994. Outcome measures: Frequency of potential transmission exposures (parenteral and sexual); most likely primary exposure; HCV infection rates in sexual partners and offspring. Results: 467 subjects responded (47% of resident cases). Of these, all but one reported actual or potential blood exposures (injecting drug user [IDU], 85%; IDU with sharing of injection equipment, 76%; pre-1990 blood transfusions, 6%; other blood exposures, 8%). Most subjects reported multiple exposures and none reported sexual contact as the only potential exposure. Of 233 sexual partners tested for HCV, 83 were positive; 54 of these were questioned and all had other parenteral exposures. Only three children out of 91 children tested were positive for HCV (two expressing maternal antibodies). Conclusions: In contrast with previous studies, possible HCV transmission modes were identified for almost all respondents. Most respondents in this community were IDUs. Non-parenteral transmission appeared minimal. Novel approaches to preventing HCV transmission in IDUs are needed. MJA 1997: 166; 290-293 Introduction Few studies have investigated transmission of hepatitis C virus (HCV) in representative, population-based samples.1-3 Most previous studies have examined patient series,4-6 those at risk (e.g., transfusion recipients and injecting drug users [IDUs])7-9 or other particular groups (e.g., blood donors, pregnant women and prisoners).10-12 Previous studies have also failed to identify exposures in significant numbers of cases (up to 45% of respondents).1-5,8 HCV transmission is predominantly parenteral13 (via shared drug injection equipment, infected blood products [almost entirely before screening was introduced in February 1990], unsterile skin penetration practices [e.g., tattooing, ear/skin piercing, acupuncture], needlestick and "sharps" injuries and shared personal items, such as toothbrushes and razors14 ). However, patient-to-patient transmission (via contaminated anaesthetic circuitry)15 and surgeon-to-patient transmission (via percutaneous injury)16 have both been demonstrated. Sexual transmission without blood contact appears rare,5,6,8,13 but the risk of blood exposure may be increased by sexual contact during menstruation and anal intercourse. Vertical transmission also appears rare.8,13,17 Both sexual and vertical transmission appear viraemia-dependent,8,9,13,17 and may be facilitated by genital lesions.6,17 Nipple trauma may enable postnatal transmission.18 Household transmission is probably restricted to infected personal items.19 Arthropod vectors have not been identified. Despite evidence that there is no risk of transmission via casual contact, community concern about hepatitis C transmission remains evident in the discrimination reported anecdotally by people with HCV. Clarification of how HCV is transmitted is needed both to allay this concern and to allow the development of new prevention strategies.20 One focus of the current Australian hepatitis C epidemic is the north coast of New South Wales (NSW), where the notification rate (201/100 000 residents) is double the NSW rate (103/100 000 residents),21 and nearly three times the Australian average (74/100 000 residents).22 We investigated the mode of transmission in notified cases in residents on the NSW north coast over a 21-month period. Methods All people diagnosed with HCV infection (through duplicate second generation anti-HCV antibody tests) who were notified to the North Coast Public Health Unit between 1 January 1993 and 30 September 1994 were invited to participate. Subject name, diagnosis and contact address were verified with attending doctors. Questionnaires were mailed to subjects with covering letters, consent statements, and reply-paid return envelopes. Non-respondents were recontacted by mail six weeks later. Data, with identifying codes removed, were entered into a restricted-access database. We developed a questionnaire that included demographic questions, a checklist of possible ways the subject may have contracted hepatitis C (see Box 1) and questions about the HCV status of the subject's current sexual partner and, for women, of their children. The questionnaire was pilot-tested on clients of a local sexual health service. The study and questionnaire were approved by the North Coast Region Health Service Ethics Committee. For subjects with multiple potential exposures, exposures were ranked according to expected risk, and the exposure with the highest risk was considered the most likely primary exposure. Parenteral exposures were assumed to be higher risk than sexual exposure and ranked as: High risk -- (in descending order of risk) injecting drug use (IDU) (with and without reported sharing of injection equipment), receipt of pre-1990 blood products, dialysis and transplants; Medium risk -- needlestick injuries, tattooing, or blood splashes into a cut, eye or mouth (i.e., during an accident or fight); and Potential or low risk -- origin from countries where medical services have used inadequate infection control procedures in the past (such as reuse of needles) or where unsterile tattooing or scarification is common (including the Mediterranean area, Eastern Europe, Asia, South America, Africa and the Middle East),23 post-1989 blood transfusion, ear or skin piercing and other clinical procedures. Transmission between study subjects and their current sexual partners was investigated; a modified questionnaire which included only the checklist of potential transmission routes was mailed to all HCV-positive partners. Household and social contact were examined when no other exposure was reported. Subjects with only low-risk or no parenteral exposures were offered testing for HCV RNA by polymerase chain reaction (PCR) to confirm their hepatitis C status. Demographic characteristics of respondents and non-respondents were compared with chi-squared tests and t tests, and sharing of injection equipment by current and former IDUs was compared with chi-squared tests. Results Of 1487 notified cases, 487 were excluded (395, temporary residents or non-residents; 67, with address unknown; seven, aged under 18 years; 18, other reasons), leaving a study population of 1000. Questionnaires were returned by 467 (46.7%). Respondents differed significantly from non-respondents in sex and age distributions: respondents included a significantly higher proportion of women than non-respondents (respondents: 219/467 [47%]; non-respondents: 212/533 [40%]; chi-squared = 4.42, P = 0.035) and were significantly older (respondents: mean age, 37.4 years; 95% confidence interval [CI], 36.6-38.3; range, 18-86; non-respondents: mean age, 34.9 years; 95% CI, 34.4-35.5; range, 18-62); t [unequal variances] = 4.70; df = 852, P < 0.001). Exposures Potential HCV exposures are shown in Box 1. Almost all 467 respondents reported at least one potential transmission exposure and most reported multiple exposures. The potential exposure with the highest expected risk was classified as the most likely primary exposure. Most respondents (398 [85%]) were IDUs (222 men, 176 women), including 287 (72%) former IDUs (although 45 [11%] of these reported stopping during the survey period). None of the 19 subjects aged over 60 years were IDUs. Of the IDUs, 354 (89%) reported having shared injection equipment. Frequency of sharing injection equipment by IDU status is shown in Box 2 (below). Current IDUs reported sharing significantly less than former IDUs ( chi-squared = 5.82; df = 1; P= 0.016). Hepatitis B infection was reported by 184 subjects (39%); 175 of these (95%) were IDUs. All but 11 sharers of injection equipment and all non-sharer IDUs reported other parenteral exposures (Box 1). Among subjects who were not IDUs, the most likely primary exposure (Box 1) was pre-1990 blood transfusion for 30 (6%), dialysis for two (0.4%), needle-stick injuries for six (1%) (including three health care workers, one with a known exposure to hepatitis C virus, a garbage collector and the partner of an IDU), tattooing for four (0.9%), blood splashes for four (0.9%), origin in a "high-risk" country for three (0.6%), post-1989 blood transfusion for two (0.4%), skin piercing for 13 (3%) and medical procedures for four (0.8%). About a third of subjects (151 [ 32%]) reported past or current HCV-positive sexual partners. However, 147 (97%) also had potential blood exposures (141, IDU; three, blood transfusion; and one each, tattoos, needlestick injury and blood splash). The remaining four had low-risk potential blood exposures (pierced ears or skin for three and a clinical procedure for one). Thus, sexual contact did not occur without concurrent or potential blood exposure(s). Sharing of personal items (e.g., toothbrushes) also could not be excluded for subjects reporting sexual contact. For 15 subjects, no sexual exposure and only low-risk potential parenteral exposures were reported. Another subject reported no risk factors. Polymerase chain reaction (PCR) was offered to these 16 to confirm their anti-HCV antibody test results. Ten were lost to follow-up (including the subject with no risk factors), three were confirmed HCV-positive (all had had clinical procedures, two had pierced ears and the third had social contact with an HCV-positive person) and three were HCV-negative, indicating either resolved infections or false positive initial antibody results. Transmission to sexual partners and offspring Three-hundred-and-twenty subjects (69%) had current sexual partners. Of 233 partners who had been tested for HCV, 83 (36%) were positive, 138 negative and 12 had unknown results. Of the positive partners, 80 (96%) were partners of IDUs, with independent parenteral exposures determined for 54 (68%) and unknown for the rest. Of the negative partners, 70 (51%) practised "unsafe" sex (defined as unprotected oral, anal or vaginal sex) with study subjects. Among the 219 women subjects, 173 had had children; 56 had had one child tested for HCV and 35, a second child. Only three children were anti-HCV positive -- two infants expressing maternal anti-HCV antibodies, and a three-year old. Discussion Many studies have investigated HCV transmission in limited patient series or specific groups,4-12 and full identification of exposures has been difficult.1-5,8 Our study was a population-based survey, and we were able to identify potential blood exposures for 99% of respondents. However, the response rate was low (47%), reflecting the difficulties of community-based surveys and, possibly, community sensitivities about bloodborne viruses. In addition, there were small but statistically significant age and sex differences between respondents and non-respondents, with a higher proportion of women among respondents and most older subjects responding. However, none of the 19 subjects aged over 60 years were IDUs. We suggest that non-IDUs would be more likely to respond than IDUs, and that a higher response rate in non-IDUs accounted for the age difference between respondents and non-respondents. Questionnaire comprehension was not thought to be a problem as the north coast population is predominantly English-speaking (96%).24 The high proportion of subjects declaring use of illicit drugs in the 60 years and under age group (89%) implies they were reporting truthfully. Therefore, we postulate that the respondents were representative of those infected with HCV in this community. If more respondents had denied injecting drugs, selection bias due to non-response of IDU subjects might have been a legitimate concern. Our results suggest that, on the NSW north coast, injecting drug use with sharing of injection equipment accounted for transmission in 76% of all people with hepatitis C. Transmission during injecting drug use remained possible in a further 9% who denied sharing injection equipment, as unrecognised contamination of such equipment (e.g., spoons, filters, water or swabs), poor recall or denial of sharing may have occurred. Apart from IDU, other high- or medium-risk blood exposures appeared to be responsible for a further 10% of respondents, and all but one of the remaining 5% had low-risk or potential blood exposures, with 1% of these also having sexual contact. While rates of IDU (past or current) may be relatively high on the NSW north coast, we suggest that almost all HCV transmission is via blood exposure, with varying proportions of different types of blood exposure in different populations. Thus, there appeared to be minimal HCV transmission via sexual, perinatal, household, occupational or social contact, provided blood exposures were avoided. Supplemental testing identified some false positives among the few subjects without obvious blood exposures. While a third of subjects had had sexual contact with HCV-positive partners, all of these had additional blood exposures (high risk for 95%, medium risk for 2% and low risk for 3%). Our results should help allay community concern about HCV transmission via casual contact. Sexual transmission appears to be minimal, but the risk may increase with menstruation, anal sex, concurrent STDs that involve scratching, sores or blisters, and increasing viraemia (often observed in early, acute stages of HCV infection). Uninfected partners should also avoid oro-facial abrasions of infected sexual partners (e.g., from toothbrushing or razor cuts). People with hepatitis C who are contemplating having children would be advised to seek medical advice regarding their HCV-RNA PCR status, hepatic enzyme function, and clinical symptoms as markers of viral activity. The low frequency of unexplained transmission in this study (< 1%) was almost entirely attributable to the high rate of reporting of injecting drug use. Other studies have found much lower rates of injecting drug use in HCV-positive subjects, but have been unable to explain transmission in a much higher proportion (27%-45%),1,3-5 possibly because of reluctance to admit illicit drug use. In our study, the privacy afforded by the self-administered questionnaire may have encouraged more truthful reporting than may occur in an interview or clinic situation. Many IDUs were former users, suggesting not only reluctance of current IDUs to participate, but also that much HCV infection is due to past drug use. Current IDUs shared injection equipment significantly less often than former IDUs, indicating increased awareness of the dangers and the effectiveness of needle and syringe exchange programs. However, sharing of injection equipment remains the commonest route of transmission of HCV, responsible for an estimated 10 000 new infections each year in Australia.25 The proportion of cases due to IDU will increase with blood product screening. This emphasises the need for transmission prevention and harm-minimisation programs, especially targeting adolescents before any experimental drug-taking. Community development and peer education of IDUs to promote safer injecting practices should be strengthened.26 The impacts of improved access to needle and syringe exchange and methadone programs, campaigns to encourage non-injecting routes of drug administration, development of non-reusable syringes,25 supply of heroin to registered users27 and provision of "safe-house" injecting venues on HCV transmission all need to be investigated. Acknowledgements Kieran Mutimer and staff at the Lismore Sexual Health and AIDS Service assisted with piloting and circulating questionnaires. References Alter MJ, Hadler SC, Judson FN, et al. Risk factors for acute non-A, non-B hepatitis in the United States and association with hepatitis C virus infection. JAMA 1990; 264: 2231-2235. Mistry SA. Hepatitis C notifications in the Australian Capital Territory, January to June 1993. Comm Dis Intell 1995; 19: 183-188. Curran M. Acute hepatitis C notifications and associated risk factors in Australia, 1995 first quarter report. Comm Dis Intell 1995; 19: 615-617. Strasser SI, Watson KJR, Lee CS, et al. Risk factors and predictors of outcome in an Australian cohort with hepatitis C virus infection. Med J Aust 1995; 162: 355-358. Weinstock HS, Bolan B, Reingold AL, Polish LB. Hepatitis C virus infection among patients attending a clinic for sexually transmitted diseases. JAMA 1993; 269: 392-394. Tor J, Llibre JM, Carbonell M, et al. Sexual transmission of hepatitis C virus and its relation with hepatitis B and HIV. BMJ 1990; 301: 1130-1133. Crofts N, Hopper JL, Bowden DS, et al. Hepatitis C virus infection among a cohort of Victorian injecting drug users. Med J Aust 1993; 159: 237-241. Meisel H, Reip A, Faltus B, et al. Transmission of hepatitis C virus to children and husbands by women infected with contaminated anti-D immunoglobulin. Lancet 1995; 345: 1209-1211. Bresters D, Mauser-Brunschoten EP, Reesink HW, et al. Sexual transmission of hepatitis C virus. Lancet 1993; 342: 210-211. Kaldor JM, Archer GT, Buring ML, et al. Risk factors for hepatitis C virus infection in blood donors: a case-control study. Med J Aust 1992; 157: 227-230. Fairley CK, Leslie DE, Nicholson S, Gust ID. Epidemiology and hepatitis C in Victoria. Med J Aust 1990; 153: 271-273. Anand CM, Fonseca K, Walle RP, et al. Antibody to hepatitis C virus in selected groups of a Canadian urban population. Int J Epidemiol 1992; 21: 142-145. van der Poel CL, Cuypers HT, Reesink HW. Hepatitis C virus six years on. Lancet 1994; 344: 1475-1479. Davis AR. Contaminated razor blades as a possible source of hepatitis C virus infection [letter]. Med J Aust 1995; 163: 275. Chant K, Kociuba K, Munro R, et al. Investigation of possible patient-to-patient transmission of hepatitis C in a hospital. NSW Public Health Bull 1994; 5: 47-51. Esteban JI, Gomez J, Martell M, et al. Transmission of hepatitis C virus by a cardiac surgeon. N Engl J Med 1996; 334: 555-560. Zanetti AR, Tanzi E, Paccagnini S, et al. Mother-to-infant transmission of hepatitis C virus. Lancet 1995; 345: 289-291. Grayson ML, Braniff KM, Bowden DS, Turnidge JD. Breastfeeding and the risk of vertical transmission of hepatitis C virus [letter]. Med J Aust 1995; 163: 107. Davis AR, Kowalik AM. Hepatitis C virus transmission to heterosexual partner: bedroom or bathroom hazard? [letter] Med J Aust 1996; 164: 126. Strasser SI. Hepatitis C: questions still to be answered [editorial]. Med J Aust 1996; 164: 132-133. Sladden TJ, Hickey AR, Beard JR. Hepatitis C on the North Coast of NSW [letter]. Med J Aust 1995; 162: 166. Longbottom H, Evans D, Myint H, Hargreaves J. Annual Report of the National Notifiable Diseases Surveillance System. Comm Dis Intell 1994; 18: 521, 533. National Health and Medical Research Council Hepatitis C Working Party. Draft report on a strategy for the detection and management of hepatitis C virus in Australia. Canberra: NHMRC, 1996. Census Applications. Socio-economic profile of the north coast of New South Wales. Lismore: North Coast Regional Co-ordination Pilot Program, NSW Premier's Department, 1996. Wodak A, Crofts N. HIV revisited: preventing the spread of blood-borne viruses among injecting drug users. Aust J Public Health 1994; 18: 239-240. Feachem RGA. Valuing the past. . .investing in the future. Evaluation of the National HIV/AIDS Strategy 1993-94 to 1995-96. Canberra: Commonwealth Department of Human Services and Health, 1995 (ISBN 0644356944). Bammer G, editor. Feasibility research into the controlled availability of opioids. Canberra: NCEPH/AIC, 1991 (ISBN 0731512359). (Received 8 Feb, accepted 20 Nov, 1996) Authors' details North Coast Public Health Unit, NSW Health Department, Lismore, NSW. Tim J Sladden, MSc, MPH, Epidemiologist; Alan R Hickey, RN, Research Assistant; Therese M Dunn, BAppSc(Comp), Research Assistant; John R Beard, MB BS, FAFPHM, Director. Reprints: Mr T J Sladden, North Coast Public Health Unit, NSW Health Department, PO Box 498, Lismore, NSW 2480. E-mail: tslad AT doh.health.nsw.gov.au - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Tim J Sladden · Alan R Hickey · Therese M Dunn · John R Beard

Reported use of asthma management plans in South Australia Justin J Beilby, Melanie A Wakefield and Richard E Ruffin MJA 1997; 166: 298 For comment see Jenkins & Bauman Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Asthma management plans - Good management - Discussion - References - Authors' details - - ©MJA1997 Abstract Objective: To examine the use of asthma management plans (AMPs) and specific elements of AMPs in a South Australian community. Design: Cross-sectional questionnaire survey by experienced interviewers. Participants and Setting: 307 adults with current asthma, confirmed by a doctor, who were among 3001 respondents of a representative sample of 4065 South Australian adults recruited by multistage systematic clustered area sampling for a larger study in March 1995. Main Outcome Measures: Prevalence of reported use of AMPs and of specific elements of AMPs, such as knowledge of trigger factors and having an action plan, and the proportion of adults with asthma receiving what we defined as "good management". Results: 46% reported having an AMP; 63% had discussed trigger factors with their doctors and 39.5% had action plans. 82% had been told the severity of their asthma, and 23.3% were receiving good management. Conclusion: Less than half of people with asthma use AMPs, although certain elements within the AMPs are reportedly being used more frequently. More research is required on why AMPs are not more generally used and, more importantly, on what elements within the AMP model are useful and effective for people with asthma and likely to be used by their general practitioners (GPs). MJA 1997; 166: 298-301 Introduction Asthma causes substantial morbidity1 and mortality,2 and costs -- in the range of $585-$720 million in Australia in 1991.3 Approximately 9% of Australians (over 1.4 million people) have reported asthma as "either a recent or long term condition in the last 12 months".4 There is evidence that the prevalence of the disease is increasing,5 and that it is both undertreated and underdiagnosed.6 The variability of the condition in both adults and children further complicates these concerns. In an attempt to create a unified approach to the management of asthma, a group of "accepted experts" developed the Asthma Management Plan (AMP), a set of consensus guidelines for health professionals.7 The Australian AMP comprises six steps: Assessing the severity of asthma; Achieving best lung function; Maintaining best lung function by identifying and avoiding triggers; Maintaining best lung function with optimal medication; Developing an action plan; and Educating the patient and reviewing regularly. These steps are aimed at doctors as an aid to achieving good asthma management. Hence, any reported use of elements of the AMP will, in part, be dependent on the use of these steps by doctors as well as on patient factors. In this study we examine the current use of AMPs and determine the specific elements of the plan that have been adopted by people with asthma and their doctors. Such information is important in planning ongoing asthma management campaigns. Methods In March 1995, a representative population sample of adults in South Australia was obtained for the Health Omnibus Survey,8 as follows. A multistage systematic clustered area sample of households was used to give a sample comprising 75% selected from the Adelaide metropolitan area and the rem ainder from country centres with populations of 1000 or more. At each household, one person aged 15 years or over (the person whose birthday was last) was selected for interview. Interviews were conducted in the respondent's home by trained interviewers, with up to six call-back visits if the selected respondent was not at home. For the purposes of our study, we included a number of questions in the Health Omnibus Survey. Respondents were asked whether they had asthma, and if they answered "yes" they were then asked to respond to the questions listed in Box 1. For the purposes of the interviews, we defined: Asthma management plans as "a coordinated method of management that covers aspects of your asthma -- medication, trigger factors, lung function measurement, etc."; Trigger factors as "incidents that can cause you to have an asthma attack"; and An asthma action plan as "written or verbal instructions of what to do if your asthma is out of control, i.e., having a bad attack". We initially examined questionnaire responses against sociodemographic variables, including age, sex, place of birth, educational attainment, and household income. Conventional chi-squared tests were used for comparisons at the univariate level, and unconditional logistic re gression analysis to adjust for potential confounders. In further analyses, we adjusted for confounding and/or interaction between variables such as place of residence, severity, age, sex and whether respondents had been told about their level of asthma severity. Separate logistic regression analyses were run for the subgroup who had been told about their asthma severity to determine the independent contribution of severity level on the dependent variable of interest. Similarly, the responses of those who had a regular doctor were analysed separately to determine differences between sources of care. Finally, we considered that patients who reported having an AMP, being told about trigger factors and having an action plan were receiving "good management", and examined factors related to good management. We excluded the optimisation of pharmacological intervention from our definition. SPSS was used for all statistical analyses.9 Results 3001 of a possible 4065 people responded (response rate, 73.8%). Of these 3001 respondents, 558 (18.6%) indicated that they had ever had asthma, and 521 (93.4%) of these had had their asthma confirmed by a doctor. Of these 521, 307 (58.9%) indicated that they still had asthma, representing 10.2% of the total sample and comprising 120 men and 186 women (one respondent did not indicate sex), with a mean age of 39.4 years (SD, 18.3; range, 15-84 years). Box 2 (below) shows that current medically confirmed asthma was more common among women than men, and declined in prevalence with increasing age. It was also more common among rural than metropolitan respondents, and among Australian-born respondents than those born elsewhere; this difference remained significant after adjusting for age and sex in logistic regression analyses. There was no relationship between current confirmed asthma prevalence and post-secondary education or annual gross household income, even after adjusting for age and sex. Asthma management plans Box 3 (above) summarises our findings on asthma management among respondents with currently confirmed asthma. Further analyses showed that having an AMP was not related to age, sex, area of residence, or whether people had been told their level of severity. However, those who had a regular doctor were more likely to have an AMP (P = 0.03). Those who saw both a general practitioner (GP) and specialist were significantly more likely to have an AMP (81.7%) than those who saw a GP only (47.6%), specialist only (41.1%) or no one (22.6%; P = 0.02). Among respondents who had been told their level of severity, those with moderate or severe asthma were more likely to report having an AMP than those with mild asthma (P < 0.01), after adjustment for other covariates. Women were more likely than men to have been told about their asthma severity (86.3% v. 75.0%; chi-squared = 6.1; P = 0.01), and those who had been told tended to be younger than those who had not (t = 3.1; P = 0.07). Among those who had been told, reported level of severity increased with advancing age (t = 5.3; P < 0.01). Severity did not vary by sex, but was greater among rural respondents than metropolitan respondents (chi-squared = 8.6; P = 0.01). The reported prevalence of discussing trigger factors and having an action plan increased with increasing asthma severity (see Box 4). It is notable that only 14 (25.4%) of those who had not been told their asthma severity had an action plan. Men were more likely than women to have no regular doctor for asthma care (22.7% v. 12.4%; chi-squared = 5.7; P = 0.02); there was no difference by age. Overall, those who had discussed trigger factors did not differ by sex, area of residence or whether they had been told their level of severity. After adjustment for covariates, discussion of trigger factors was more likely among younger respondents (P < 0.05) and those who had a regular doctor (P < 0.01). Among those who had been told their level of severity, logistic regression analysis showed that those with severe asthma were more likely than those with moderate or mild asthma to have discussed trigger factors (P < 0.05). Of those with a regular doctor, source of care was unrelated to discussion of trigger factors. Respondents who reported having an action plan did not vary by age, area of residence or whether they had been told their level of severity. Action plans were more common among women (P < 0.05) and those who had a regular doctor (P < 0.05), and among those who had been told they had moderate or severe asthma than mild asthma (P < 0.01). For respondents with a regular doctor, source of care was unrelated to having an action plan. Good management Seventy-one respondents with currently confirmed asthma (23.3%) were receiving "good management". Good management was unrelated to age, sex, area of residence or whether respondents had been told their level of severity, but was more likely among those who had a regular doctor (P < 0.05). Among those who had been told their level of severity, those with moderate or severe asthma were more likely to be receiving good management than those with mild asthma (P < 0.001). Of those with a regular doctor, source of care was unrelated to receiving good management. Discussion Given that the AMP model was initiated in 1989, our finding of a prevalence of reported use of AMPs of 46%, with much higher prevalences for certain elements of AMPs, is reassuring. It is noteworthy that we found AMPs to be more common among people who had been told their asthma was severe and those with a regular doctor. Our finding that 39.5% of respondents had an action plan is a somewhat higher result than those of previous reports,10,11 possibly indicating an increase in their use. As we found that reported use of action plans did not vary by age, the different age profile of our study compared with that of Comino and colleagues10 (mean, 39.4 years; range, 15-84 years v. mean, 37.4 years; range, 18-50 years) is unlikely to have contributed to the apparent doubling in prevalence of action plan use that we observed. However, unlike the other study, we included verbal as well as written action plans, and this may have been responsible for the difference. Our study was based on self-report, and responses were not validated. However, our method of assessing self-reported asthma has been used in a previous validated epidemiological study.12 There may have been under-reporting in the responses to the questions, even though we used trained interviewers. However, despite these methodological problems, the key measure of the acceptability of the AMP and its elements is their reported use in the community. We are aware that the term "asthma management plan" may have introduced some problems in that our def inition of the AMP encompassed as - sessment of severity, trigger-factor discussions and the development of an action plan. Hence, it is possible that people who reported using an AMP may have been including the other three elements. However, as a main objective was to compare the uptake of the "complete" AMP with that of its individual elements, we believed it was important to include all these questions in the survey. We found that certain elements of the AMP are being adopted more frequently than others, which may indicate that patients find these steps more appropriate to their specific needs, or that doctors (GPs and specialists) find certain elements of the AMP easier to use or implement. GPs are the principal providers of asthma care in the community and it is probable that they have a considerable effect on the uptake of the AMP model. Developing a "complete" management plan may be too onerous a task for a busy GP. Conversely, GPs may find the AMP model does not satisfy their individual needs and, as a consequence, choose specific elements from the AMP model for their everyday practice.13 Over 80% of our respondents, most of whom had mild to moderate asthma, saw a GP for all or part of their asthma care. As there is evidence that GPs' management of asthma is very variable,14,15 it is important to concentrate on providing useful and focused education for GPs. Urgent clarification is needed of the key steps within the AMP model that will reduce mortality and morbidity in people with asthma and improve their quality of life. Interestingly, we found that only 41% of the respondents attending a specialist only had an AMP. As specialists spend more time with their patients and deal with people with more severe asthma, this finding requires further investigation. It has been suggested that some steps of the AMP may be inappropriate for general application. For example, peak flow meters are supposed to be used in both steps 2 and 3, but Ruffin and Pierce have proposed that aiming to have all asthmatic patients record peak expiratory flow over the long term may not be worthwhile,16 and that focusing on, for example, those at risk of dying, those in uncertain clinical situations (e.g., those with exercise-induced asthma) and those who are "particularly interested" in monitoring their asthma would be more cost effective. They emphasised the need for a more rigorous scientific approach to examining "the basis for and benefit of" peak expiratory flow.16 In a more recent paper Gibson et al. state that "action plans have received little controlled evaluation".17 Among 35 adult asthma patients, they found that the current increase in medication recommended in the AMP action plan had a high failure rate. On the other hand, there is evidence that regular review (step 6 of the AMP) can reduce days lost from work or school18 and home visits by GPs,19 and that patient education (step 5) improves symptom control20 and reduces visits to accident and emergency departments.21 The guidelines in the AMP model have come to be accepted as the "gold standard" of asthma management in most countries.22,23 However, what is needed now is a careful re-evaluation 24 to ensure that "unsound practice" does not become formalised.25 A new perspective may be required that embraces the variability in management and clinical encounters.26 Not surprisingly, we found that having a regular doctor is the main determinant of "good management" -- regular review is likely to allow time for the introduction of more steps in the AMP. The challenge in continuing to evaluate an introduced management program in clinical practice is substantial. If over half the population of asthmatic patients have already been exposed to the asthma management plan in part or in full, how can this be done? Small intensive clinical trials with objective outcomes such as peak flow measurements, or case-control studies comparing asthmatic patients with and without good quality of life, could be performed, but would have the disadvantage of not being generalisable to the population at large. Large population studies with specific outcome measures would rely on the outcome measures being validated against accepted criteria of asthma control. A national project that used specific health outcomes, such as prescriptions of reliever or preventer agents, and monitored hospital admissions for asthma could be used to evaluate interventions introduced on a State or regional basis. To coordinate and cooperate in such a project would present a challenge to organisations involved in asthma management. There is current interest in coordinated care programs for chronic diseases and the time is right to introduce an evaluation strategy for different interventions in asthma. References Campbell D, Ruffin R, McEvoy RD, Crockett AJ. South Australian asthma symptoms prevalence survey [abstract]. Paper presented at the Annual Scientific Meeting of The Thoracic Society of Australia and New Zealand. 1991 7-11 Apr; Lorne, Vic. Aust N Z J Med 1991; 21: 658. Jenkins WA, Hurley SF, et al. Trends in Australian mortality of asthma 1979-1985. Med J Aust 1988; 149: 620-624. National Asthma Campaign. Report on the cost of asthma in Australia 1994. Melbourne: National Asthma Campaign, 1994. National Health Survey 1989/90. Canberra: Australian Bureau of Statistics, 1991. Robertson CF, Heycock E, Bishop J, et al. Prevalence of asthma in Melbourne school children: change over 26 years. BMJ 1991; 302: 1116-1118. Bauman A, Young L, Peat J, et al. Asthma under-recognition and under-treatment in an Australian Community. Aust N Z J Med 1992; 22: 36-40. Woolcock A, Rubinfield A, Seale P, et al. Asthma management plan, 1989. Med J Aust 1989; 151: 650-652. Wilson D, Wakefield M, Taylor A. The South Australian Health Omnibus Survey. Health Promotion J Aust 1992; 2: 47-49. Nornsis MJ. SPSS for Windows. Advanced statistics release 6.0. Chicago: SPSS Inc, 1993. Comino E, Mitchell C, Bauman A, et al. Asthma management in eastern Australia, 1990 and 1993. Med J Aust 1996; 164: 403-406. Tse M, Bridges-Webb C, Bauman A. The impact of a mass communication campaign on the reported management of asthma by general practitioners. Fam Pract 1993; 10: 263-267. Abramson M, Kutin J, Bowes G. The prevalence of asthma in Victorian adults. Aust N Z J Med 1992; 22: 358-363. Armstrong D, Fry J, Armstrong P. General practitioners' views of clinical guidelines for the management of asthma. Int J Qual Health Care 1994; 6: 199-202. Bauman A, McKenzie D, Young L, Yoon R. Asthma education: the perception of family physicians. J Asthma 1990; 27: 385-392. Coates J, Steven I, Beilby J, et al. Knowledge and reported asthma management among South Australian General Practitioners. Br J Gen Pract 1994; 44: 123-126. Ruffin R, Pierce R. Peak flow monitoring -- which asthmatics, when and how? Aust N Z J Med 1994; 24: 519-520. Gibson P, Wlodarczyk J, Hensley M, et al. Using quality-control analysis of peak expiratory flow recordings to guide therapy for asthma. Ann Intern Med 1995; 123: 488-492. Charlton I, Charlton G, Broomfield J, Rullee M. Audit of the effect of a nurse run asthma clinic on workload and patient morbidity in general practice. Br J Gen Pract 1991; 41: 227-231. Charlton I, Charlton G, Broomfield J, Campbell M. An evaluation of a nurse-run asthma-clinic in general practice using an attitudes and morbidity questionnaire. Fam Pract 1992; 9: 154-160. Wilson S, German D, Sulochina L, et al. A controlled trial of two forms of self-management education for adults with asthma. Am J Med 1993; 94: 564-576. Bolton M, Tilley B, Kuder J, et al. The cost and effectiveness of an education program for adults who have asthma. J Gen Intern Med 1991; 6: 401-407. Guidelines for the diagnosis and management of asthma. Bethesda, Md.: United States Department of Health and Human Services, August 1991. (Publication No. 91-3042.) International consensus report on diagnosis and managment of Asthma. Bethesda, Md.: United States Department of Health and Human Services. June 1992. (Publication No. 92-3091.) Thompson P, Lavender M, Madhok R. How to ensure that guidelines are effective. BMJ 1995; 311: 237-242. Delamothe T. Wanted: guidelines that doctors will follow. Implementation is the problem. BMJ 1993; 307: 218. Parmley W. Clinical practice guidelines. Does the cookbook have enough recipes? JAMA 1994; 272: 1374-1375. (Received 17 Apr, accepted 11 Nov, 1996) Authors' details Research & Health Promotion Unit, Royal Australian College of General Practitioners, Adelaide, SA. Justin J Beilby, MPH, FRACGP, Director. Behavioural Epidemiology Unit, South Australian Health Commission, Adelaide, SA. Melanie A Wakefield, MA, PhD, Senior Behavioural Scientist. Department of Thoracic Medicine, The Queen Elizabeth Hospital, Adelaide, SA. Richard E Ruffin, MD, FRACP, Director. No reprints will be available. Correspondence: Dr J J Beilby, Department of General Practice, University of Adelaide, Adelaide, SA 5005. - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Justin J Beilby · Melanie A Wakefield · Richard E Ruffin

Australian patients' delay in response to heart attack symptoms Kathleen Dracup, Sharon M McKinley and Debra K Moser MJA 1997; 166: 233 For comment see Langton and Thompson Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Statistical analyses - Results - Associations with delay time - Discussion - Acknowledgements - References - Authors' details - - ©MJA1997 Abstract Objectives: To examine delay in seeking treatment among patients with an evolving acute myocardial infarction (MI), and to identify factors which contributed to this delay. Design: Patient interview combined with medical record review. Participants and setting: 317 patients with confirmed diagnosis of acute MI interviewed within 72 hours of admission to three hospitals. Main outcome measures: Delay from onset of symptoms to arrival at hospital, and cognitive, emotional, sociodemographic and clinical factors which contributed to increased prehospital delay. Results: Median prehospital delay was 6.4 hours; 41% of patients delayed less than four hours, while 28% delayed less than two hours. Prehospital delay was increased in patients with fewer years of education (P = 0.001), lower income (P = 0.003) and transportation to the hospital by private car rather than ambulance (P = 0.02). Delay time was increased by several cognitive and emotional processes (P < 0.001), such as waiting to see if symptoms would go away, being too embarrassed to ask for assistance, and not recognising the importance of symptoms. Delay time was increased with heartburn, breathlessness or intermittent symptoms and decreased with sweating and dizziness (P < 0.05). Independent predictors of increased prehospital time (P < 0.01) were fewer than 10 years of education, not wanting to trouble anyone, failing to recognise the symptoms of delay, and the intermittent nature of symptoms. Conclusion: Over 50% of acute MI patients delay seeking treatment by six hours or more. Many factors related to cognitive and social processes that contribute to this delay may be remediable with appropriate patient and community education. MJA 1997; 166: 233-236 Introduction Every year in Australia approximately 22 000 people suffer a heart attack and approximately half of these die. Most of these deaths occur out of hospital.1 The high mortality associated with acute myocardial infarction (MI) is dismaying, given that major large-scale clinical trials have shown that thrombolytic therapy can significantly reduce mortality from MI.2 With this therapy, the shorter the interval between the onset of symptoms and when the drug is given, the better the outcome.2 If therapy is started within three hours of symptoms, mortality is reduced by 23%;3 this becomes 45% if started within one hour of symptoms.3 Similarly, the earlier the treatment, the better the resulting cardiac function and the lower the incidence of morbidity after MI.4 Prehospital delay is known to be a substantial problem. Median delay times ranging from just under two hours5 to six-and-a-half hours have been reported.6 Overall, approximately 25%-50% of MI patients delay seeking medical care for cardiac symptoms for more than six hours.7,8 In other countries, the factors associated with increased prehospital delay are being older; being female; having a clinical history of hypertension, diabetes, angina or congestive heart failure; having low emotional or somatic awareness; consultation with a spouse or other relative; consultation with a doctor; and self-treatment. Decreased prehospital delay occurs when there is haemodynamic instability, large infarct size, sudden onset of severe chest pain, recognition of symptoms as heart-related and consultation with a non-relative.8,9 We do not know if the characteristics that contribute to delay in seeking treatment for acute MI symptoms are similar for Australian patients. Such information is important for designing appropriate patient and community education programs. Therefore our aims were, firstly, to describe prehospital delay time in Australian patients experiencing symptoms of evolving acute MI and, secondly, to identify the cognitive, emotional, sociodemographic and clinical factors which contribute to this delay. Methods We gained appropriate institutional ethics committee review and approval for the study from the study hospitals and the University of Technology, Sydney. Eligible patients admitted to three hospitals between 1 March and 31 July 1995 were invited to participate in the study and gave written informed consent. Patients were eligible if they were able to read and write English, lived independently, were free from malignancy or other complicating illness, alert and orientated, were within 24 and 72 hours of hospital admission, and had a diagnosis of acute MI, determined by:Chest pain lasting longer than 20 minutes; Serial electrocardiographic evidence of acute MI (i.e., appearance of new Q waves in at least two leads of a 12-lead standard electrocardiogram); and Elevations in serum creatine kinase-MB consistent with evolving MI. Only patients with Q-wave MI were studied. Patients were excluded if they were being mechanically ventilated. The hospitals were two metropolitan university-affiliated city teaching hospitals and a district hospital, chosen because their geographical catchment areas were relatively small, so transportation time would not add significantly to the time between symptom onset and arrival at the hospital. We reviewed medical records to obtain sociodemographic and clinical data. We assessed information about the cognitive, emotional and social processes surrounding the decision to seek treatment using the Response to symptoms questionnaire, designed to obtain information about patient delay and factors contributing to delay in six domains: (1) context in which MI symptoms appeared; (2) antecedents of symptoms; (3) affective response to symptoms; (4) behavioural response to symptoms; (5) cognitive response to symptoms; and (6) the response of others to patient symptoms.10 Based on growing evidence that cognitive, symptom-appraisal and social factors may be more important determinants of delay than knowledge about appropriate re sponse to symptoms,10 we modified the instrument to further assess cognitive, symptom-appraisal and social factors surrounding a patient's decision to seek care for acute MI symptoms. The resulting instrument assesses factors surrounding the onset of acute MI symptoms, the response of others to symptoms, and the patient's response to symptoms. We established the time from symptom onset to hospital admission by reviewing the medical record for the time stated in the admission record by the admitting physician and the time of admission to the hospital. Also, each patient was asked about the time of first symptoms. If symptoms had come and gone, patients were carefully interviewed to determine the nature of those symptoms and the exact time that cardiac symptoms began. Where the patient's account differed from the time recorded by the admitting doctor, cardiac enzymes and serial electrocardiograms were reviewed to identify the most likely time of symptom onset. The value that most closely matched the expected clinical course reflected in the tests was chosen. Patients were asked if they wanted to complete the questionnaire themselves or if they wanted the researcher to read the questions; 96% chose the latter. Statistical analyses Independent t tests or analysis of variance (with post-hoc t tests adjusted for multiple comparisons) were used to assess the impact of sociodemographic, clinical, cognitive and social factors. Delay time was markedly skewed, so we used square root transformations to obtain a normal distribution, and all analyses were performed on transformed values. Multiple logistic regression and χ2 tests were used to determine odds ratios for delays of more than two hours among several sociodemographic, clinical, social and cognitive variables. Variables that were significantly different (P < 0.05) on delay time were entered into the forward stepwise logistic regression. Criteria for entry and removal of variables were based on the likelihood ratio test, with enter and remove limits set at P < 0.05 and P > > 0.05. Results Of 321 eligible patients approached, 317 agreed to participate in the study; four declined, giving fatigue as a reason. Patients were predominantly older (mean, 63 years; standard deviation, 12 years), male, married and white. There was diversity in years of formal education and socioeconomic status. Most patients experienced their symptoms at home and most went to hospital by ambulance (Box 1). Many patients were at greater than average risk for suffering an acute MI, with previous medical histories of angina pectoris (43%), MI (28%), hypertension (53%) and/or diabetes mellitus (19%). Most MIs were inferior (46%) or anterior (32%). Median prehospital delay time was 6.4 hours (interquartile range, 1.9-19.9 h; mean, 17.3 h). Only 14% of patients arrived within one hour of the onset of symptoms, 28.5% within two hours and 41% within four hours. However, 54% arrived at the hospital more than six hours after first experiencing cardiac symptoms. One hundred and fifty-three patients (48%) received thrombolytic therapy; 29 within one hour of the onset of symptoms. Associations with delay time Sociodemographic factors: Box 1 shows that there were differences in delay time according to education, annual income and use of ambulance. There was no significant association with sex, age, ethnicity, the location where symptoms occurred or whether or not a spouse was present when they occurred. Symptoms and pain: We examined breathlessness, fatigue, weakness, vague chest discomfort, chest pain, neck pain, arm numbness, pain between shoulder blades, back pain, nausea, feeling that something was wrong, dia phoresis, feeling clammy, heartburn, and dizziness. Delay time was less if patients were dia phoretic (P = 0.001) or experienced dizziness (P = 0.03) and increased if they were breathless (P = 0.03) or experienced heartburn (P = 0.03). The remaining symptoms made no difference to delay times. If symptoms were intermittent, patients took longer to seek treatment (P = 0.0001), while those who believed their symptoms to be cardiac in nature delayed for shorter times (P = 0.001). However, 60% originally attributed their symptoms to another cause (e.g., muscle pain, fatigue, indigestion). Patients who appraised their pain as very serious delayed a shorter time than patients who appraised their pain as not serious (P = 0.001). However, patients who rated their initial chest pain as severe had similar delay times to patients who rated their pain as mild (P = 0.644). Knowledge of coronary heart disease: There were no differences in the average time to arrival at hospital related to previous myocardial infarction, previous cardiac surgery, diabetes mellitus, hypertension or angina. Forty per cent of patients reported that their source of information about MI symptoms was television or reading; 27% received their information from a friend; 23% from a doctor; and 10% from a nurse. Sixteen per cent of patients knew about thrombolysis therapy for acute MI and these, on average, came to the hos pital earlier than patients who did not know about this treatment (P = 0.001). Cognitive and psychological factors: Box 2 (below) shows significant associations between patients' responses and delays in seeking medical treatment. Independent predictors of delay: We tested factors that were significant on univariate analyses in a multiple regression model. The five independent predictors of delay are shown in Box 3. Discussion In 317 patients admitted to hospital for evolving acute MI, we found that median prehospital delay was 6.4 hours. Almost 60% of patients delayed more than four hours, while more than 70% delayed longer than two hours. These times are substantially longer than those recorded in most studies from other countries,4-6,8,11 as well as those documented in previous Australian studies.12,13 The disparity between this and previous Australian studies is un doubtedly related to a difference in the definitions used to characterise prehospital delay. In the first Australian study, time from symptom onset to the first attempt to get help was reported.12 In the second, the definition of total delay time was the period from the onset of chest pain to arrival at hospital; where there were multiple episodes of chest pain, the time from the last episode of pain was used.13 Both variations in definitions would shorten reported delay time relative to the definition we used. It is unlikely that longer transportation times to the hospital contributed to longer delay times in our study because of the geographic situation of the participating hospitals and the high rate of ambulance use. Moreover, all studies on this topic have found that home-to-hospital time, as well as in-hospital time, play a minor role in the delay that occurs before definitive treatment.8,14,15 We included only those patients who survived to hospital admission and who met our inclusion criteria, and hence our patients were clearly not representative of all patients with acute MI. Unfortunately, approximately 30% of such patients die of sudden cardiac death before reaching the hospital,1 and we excluded patients because they were unable to respond to questions within the designated 72 hours of hospital admission (e.g., because they required mechanical ventilation or had compromised mental status). In the past, most researchers have focused on identifying patients who are more likely to delay a decision to come to the hospital because of various sociodemographic and clinical characteristics. In our study, the most important factor predicting delay was years of formal education, a characteristic that health professionals cannot alter. However, it may be linked with other characteristics (e.g., income, age, coping styles or other underlying cognitive mechanisms affecting delay), some of which may be amenable to change. Many of our patients had difficulty identifying their symptoms as cardiac in nature, initially thinking they were gastrointestinal, musculoskeletal, or fatigue. Many patients knew the classic signs of acute MI but did not know the diversity of its presentation, notably its often intermittent nature. Patients should be told that the symptoms may come on gradually or may not be constant, as many believe that MI is accompanied by sudden, crushing chest pain and unconsciousness. As in other studies,5,12,16,17 experience of a previous MI did not result in patients coming to the hospital sooner. Thus, the public, particularly patients at high risk for a future MI, need to be informed that the manifestations of an evolving MI may vary, even within the same individual, and should be clear about the actions to take if and when symptoms occur. In most studies in the United States, less than half of MI patients arrive by ambulance,18 whereas in our study most patients in all three hospitals used this means of transportation. Ambulance is preferable to other types of transportation because of the early treatment available and because delay times are usually reduced.18 From the accounts of patients in this study, doctors and nurses played minimal roles in providing information about the symptoms of MI, compared with knowledge gained from television, reading and friends. Counselling strategies tested in other clinical populations support the assumption that individuals who are prepared for certain signs and symptoms will delay less in seeking care than individuals who have no such preparation.19-21 They also suggest that health professionals should take a more proactive and intensive approach to educating patients about the nature of MI signs and symptoms and the steps to take to receive early treatment. These data also indicate the opportunity for professional organisations to enhance the knowledge and beliefs of patients by community educational programs via television, radio and newspapers. Very few patients knew about thrombolysis and its effectiveness in treating acute MI, but those who did presented sooner than those who did not. Based on these findings, health care professionals should emphasise the rationale for early treatment to patients at high risk for future MI, and public campaigns should advertise the benefit of seeking early treatment. Patients need to know that their decision to seek immediate treatment has important future rewards as this may override whatever trepidation they experience in acknowledging that they might be having a heart attack. In summary, almost all the significant predictors of delay we identified related to social and cognitive processes that might be amenable to change. Health care professionals should recognise the reluctance of patients to recognise MI symptoms as cardiac and provide them with the necessary guidance, so that they will seek care as soon as possible. The availability of newer forms of treatment, particularly thrombolytic therapy, provides a compelling reason for physicians and nurses to encourage patients and their families to seek care early to preserve ischaemic myocardium and reduce infarct size in the face of an evolving MI. Acknowledgements Funding for this study was provided by a Fulbright Foundation Senior Scholars grant and from the L W Hassenplug Chair funds. We thank the following nurses who assisted with data collection: Patricia Cameron, Marie Droulers, Cameron Goodear, Jennifer Kidd, Jacqueline Padley, Rebecca Scammell and Jennifer Williams. References Heart and stroke facts. Canberra: National Heart Foundation of Australia, 1995. Fibrinolytic Therapy Trialists' (FTT) Collaborative Group. Indications for fibrinolytic therapy in suspected acute myocardial infarction: collaborative overview of early mortality and major morbidity results from all randomised trials of more than 1000 patients. Lancet 1994; 343: 311-322. Gruppo Italiano per lo Studio della Stretochinasi nell'Infarto Miocardico (GISSI). Effectiveness of intravenous thrombolytic treatment in acute myocardial infarction. Lancet 1986; 1: 397-401. Simoons ML, Serruys PW, Brand MVD, et al. Early thrombolysis in acute myocardial infarction: Limitation of infarct size and improved survival. J Am Coll Cardiol 1986; 7: 717-721. Maynard C, Althouse R, Olsufka M, et al. Early versus late hospital arrival for acute myocardial infarction in the western Washington thrombolytic therapy trials. Am J Cardiol 1989; 63: 1296-1300. Cooper RS, Simmons B, Castaner A, et al. Survival rates and prehospital delay during myocardial infarction among black persons. Am J Cardiol 1986; 57: 208-211. Dracup K, Moser D. Treatment seeking behavior among those with symptoms and signs of acute myocardial infarction. Heart Lung 1991; 20: 570-575. GISSI-Avoidable Delay Study Group. Epidemiology of avoidable delay in the care of patients with acute myocardial infarction in Italy. Arch Intern Med 1995; 155: 1481-1488. Dracup K, Moser D, Eisenberg M, et al. Causes of delay in seeking treatment for symptoms of acute myocardial infarction. Soc Sci Med 1995; 40: 379-392. Burnett RE, Blumenthal JA, Mark DB, et al. Distinguishing between early and late responders to symptoms of acute myocardial infarction. Am J Cardiol 1995; 75: 1019-1022. Schwarz B, Schoberberger R, Rieder A, Dunze M. Factors delaying treatment of acute myocardial infarction. Eur Heart J 1994; 15: 1595-1598. Bett N, Aroney G, Thompson P. Impact of a national educational program to reduce patient delay in possible heart attack. Aust N Z J Med 1993; 23: 157-161. Leitch JW, Birbara T, Freedman B, et al. Factors influencing the time from onset of chest pain to arrival at the hospital. Med J Aust 1989; 150; 6-8. Schroeder JS, Lamb IH, Hu M. The pre-hospital course of patients with chest pain: analysis of the prodromal, symptomatic, decision-making, transportation and emergency room periods. Am J Med 1978; 64: 742-748. Schmidt SB, Borsch MA. The prehospital phase of acute myocardial infarction in the era of thrombolysis. Am J Cardiol 1990; 65: 1411-1415. Turi ZG, Stone PH, Muller JE, et al. Implications for acute intervention related to time of hospital arrival in acute myocardial infarction. Am J Cardiol 1986; 58: 203-209. Weilgosz ATJ, Nolan RP, Earp JA, Biro E. Reasons for patients' delay in response to symptoms of acute myocardial infarction. Can Med Assoc J 1988; 139: 853-857. Meischke H, Ho MT, Eisenberg MS, et al. Reasons patients with chest pain delay or do not call 911. Ann Emerg Med 1995; 25: 193-197. Bandura A. Self-efficacy; toward a unifying theory of behavior change. Psychol Bull 1977; 84: 191-198. Bailey WC, Richards JM Jr, Brooks CM, et al. A randomized trial to improve self-management practices of adults with asthma. Arch Intern Med 1990; 150: 1664-1667. Avis NE, Smith DW, McKinlay JB. Accuracy of perceptions of heart attack risks: what influences perceptions and can they be changed? Am J Public Health 1989; 17: 1608-1611. (Received 28 Mar, accepted 20 Nov, 1996) Authors' details University of California, Los Angeles, CA, USA. Kathleen Dracup, RN, DNSc, L W Hassenplug Professor of Nursing. University of Technology, Sydney, and Royal North Shore Hospital, Sydney, NSW. Sharon M McKinley, RN, PhD, Professor of Critical Care Nursing. College of Nursing, Ohio State University, Columbus, OH, USA. Debra K Moser, RN, DNSc, Assistant Professor. Reprints: Professor S M McKinley, Level 6, Royal North Shore Hospital, St Leonards, NSW 2065. E-mail: smckinle AT doh.health.nsw.gov.au - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Kathleen Dracup · Sharon M McKinley · Debra K Moser

"Mental health literacy": a survey of the public's ability to recognise mental disorders and their beliefs about the effectiveness of treatment Anthony F Jorm, Ailsa E Korten, Patricia A Jacomb, Helen Christensen, Bryan Rodgers and Penelope Pollitt MJA 1997; 166: 182 Abstract - Introduction - Methods - Sample - Interview - Ethical approval - Results - Recognition - Choice and rating of available help - Prognosis - Discussion - References - Authors' details - ©MJA1997 Abstract Objectives: To assess the public's recognition of mental disorders and their beliefs about the effectiveness of various treatments ("mental health literacy"). Design: A cross-sectional survey, in 1995, with structured interviews using vignettes of a person with either depression or schizophrenia. Participants: A representative national sample of 2031 individuals aged 18 -74 years; 1010 participants were questioned about the depression vignette and 1021 about the schizophrenia vignette. Results: Most of the participants recognised the presence of some sort of mental disorder: 72% for the depression vignette (correctly labelled as depression by 39%) and 84% for the schizophrenia vignette (correctly labelled by 27%). When various people were rated as likely to be helpful or harmful for the person described in the vignette for depression, general practitioners (83%) and counsellors (74%) were most often rated as helpful, with psychiatrists (51%) and psychologists (49%) less so. Corresponding data for the schizophrenia vignette were: counsellors (81%), GPs (74%), psychiatrists (71%) and psychologists (62%). Many standard psychiatric treatments (antidepressants, antipsychotics, electroconvulsive therapy, admission to a psychiatric ward) were more often rated as harmful than helpful, and some non-standard treatments were rated highly (increased physical or social activity, relaxation and stress management, reading about people with similar problems). Vitamins and special diets were more often rated as helpful than were antidepressants and antipsychotics. Conclusion: If mental disorders are to be recognised early in the community and appropriate intervention sought, the level of mental health literacy needs to be raised. Further, public understanding of psychiatric treatments can be considerably improved. MJA 1997; 166: 182-186 Introduction "Health literacy" has been defined as the ability to gain access to, understand, and use information in ways which promote and maintain good health.1 By extension, we have coined the term "mental health literacy" to refer to knowledge and beliefs about mental disorders which aid their recognition, management or prevention. Mental health literacy includes the ability to recognise specific disorders; knowing how to seek mental health information; knowledge of risk factors and causes, of self-treatments, and of professional help available; and attitudes that promote recognition and appropriate help-seeking. The lifetime risk of developing a mental disorder is so high (nearly 50%)2 that almost the whole population will at some time have direct experience of such a disorder, either in themselves or in someone close. A high public level of mental health literacy would make early recognition of and appropriate intervention in these disorders more likely. Previous information on this topic is limited and is derived from national surveys on depression alone,3-5 or on depression and schizophrenia.6 Although these surveys found that most people believed depression to be treatable,3-5 most respondents had negative views about the effectiveness of medication for mental disorders. In contrast, counselling and psychotherapy were generally viewed more favourably.3,4,6 To assess the mental health literacy of the Australian population, we surveyed a representative national sample of adults on their knowledge of and beliefs about schizophrenia and depression. We report our findings on the ability of this population to recognise these disorders and their beliefs about the effectiveness of various treatments. Methods Sample The survey was carried out by the Australian Bureau of Statistics in August 1995 as part of its Population Survey Monitor.7 This is a household survey covering all private dwellings in urban and rural areas (excluding the sparsely settled areas) across all States and Territories. Selected households were initially sent a letter explaining that their dwelling had been selected for the survey. The letters gave advance notice that an interviewer would call to make an appointment. Interviewers made at least three call-backs in rural areas and at least five in urban areas before a dwelling was classified as "non-contact". Contact was made with a sample of 2531 households, with one person randomly sampled per household for a personal interview; 2164 persons agreed to participate (85%). Because a pilot study showed that people aged more than 75 years often had trouble understanding the interview, this age group was excluded, leaving a sample of 2031 respondents, aged 18-74. Fifty-six per cent of the sample was female and 74% Australian-born. The age distribution was: 21% aged 18-29, 25% aged 30-39, 22% aged 40-49, 16% aged 50-59, 11% aged 60-69 and 5% aged 70-74. The highest educational qualification was: secondary school certificate (51%), trade certificate/apprenticeship (11%), other certificate (17%), associate or undergraduate diploma (7%), bachelor's degree or higher (13%), still at school (1%). Weights were provided for each respondent, based on complex ratio estimation procedures, to adjust for probabilities of selection and to reduce non-response bias.7 Weighted percentages, which represent estimates of the whole of the Australian population aged 18-74, are presented here. Interview The interview was based on a vignette of a person suffering from a mental disorder. Half the sample were shown a vignette describing a person who met ICD-108 and DSM-IV9 criteria for major depression ( Box 1) and the others were shown a vignette of a person who met ICD-108 and DSM-IV9 criteria for schizophrenia ( Box 2). The sex of the person described was randomly assigned to be male (John) or female (Mary). After being shown the vignette and having it read out to them, respondents were asked two open-ended questions: "What would you say, if anything, is wrong with John/Mary?" and "How do you think John/Mary could best be helped?" The rest of the interview consisted of questions to determine the respondents' knowledge of and views about: Various people who could help (whether each category of person was likely to be helpful, harmful, or neither, for the person described); A range of possible treatments (whether each treatment was likely to be helpful, harmful, or neither, for the person described); Knowledge of likely prognosis; Knowledge of risk factors; and Beliefs associated with stigma and discrimination. Ethical approval Approval was obtained from the Ethics in Human Experimentation Committee of the Australian National University. Statistical analysis Using the chi-squared test, all estimates were compared according to recognition of a mental health problem. Only differences significant at the 0.01 level (P < 0.01) are reported below. Results Of the 2031 persons interviewed, 1010 were shown the depression vignette (508, John and 502, Mary) and 1021 were shown the schizophrenia vignette (514, John and 507, Mary). Recognition Figure 1 summarises responses to the question "What would you say, if anything, is wrong with John/Mary?", and shows those categories mentioned by at least 5% of the respondents (all responses were later categorised by the researchers). Multiple responses were allowed, and 30% of respondents gave at least two answers. For the depression vignette, 39% correctly identified depression and 22% mentioned stress. In all, 72% mentioned a category that could be regarded as being within the sphere of mental health. Eleven per cent mentioned items that we categorised as physical disorders (e.g., viruses, nutritional deficiencies, cancer), and half of these respondents did not mention a mental problem. A further 17% gave only answers that were extremely variable, but which we grouped as "personal or employment-related problems", "problems with not being active or sociable enough", and "other". Seven per cent of the sample responded with "don't know". For the schizophrenia vignette, although 84% mentioned at least one category in the sphere of mental health, only 27% recognised schizophrenia and a further 26% mentioned depression. Physical disorders were the only suggestion from 2% of the respondents, while 13% gave responses that described neither physical nor mental disorders (e.g., "has a problem"). There was less uncertainty with the schizophrenia vignette, however, in that only 4% responded with "don't know". Choice and rating of available help For the second open-ended question -- "How do you think John/Mary could best be helped?" -- 34% of the respondents (across both vignettes) made more than one suggestion. For the depression vignette, the most frequent response was "see a doctor" (44%), followed by "see a counsellor" (23%) and "talk over with family or friends" (20%). A psychiatrist was mentioned by 8%, while 5% answered "don't know". Responses for the schizophrenia vignette were: counsellor (31%), psychiatrist (28%), doctor (27%), family or friends (20%) and "don't know" (4%). The respondents were given a list of people who might potentially provide help and were asked to rate the various helpers by saying whether each would be helpful or harmful (Figure 2a). For the depression vignette, most of the respondents regarded GPs (83%), counsellors (74%), close friends (73%) and close family (70%) as helpful; around half the population rated telephone counselling services (53%), psychiatrists (51%) and psychologists (49%) as helpful. Fewer than 10% felt that any of the above groups would be harmful, although 43% believed it would be harmful for someone with depression to deal with it on their own. For the schizo phrenia vignette, most respondents regarded counsellors (81%), GPs (74%) and psychiatrists (71%) as helpful; a larger proportion of the population than for the depression vignette believed it would be harmful to try and deal with such problems alone (55%). Rating of pharmacological treatments Respondents were given a list of pharmacological treatments (Figure 2b) to rate as helpful or harmful. For the depression vignette, more of the respondents regarded each of the medications as harmful than helpful. The exception was the category vitamins, minerals, tonics or herbal medicines, which were regarded as helpful by 57% of respondents, and as harmful by 3%. Antidepressant medication was recognised as helpful by 29% and as harmful by 42% of respondents. For the schizophrenia vignette, antidepressants were regarded as helpful by 38% of respondents, followed by vitamins and minerals (34%) and antipsychotics (23%). The greatest percentage of "don't know" responses was for antipsychotics (about one-fifth of the respondents for both vignettes). Rating of non-pharmacological treatments When respondents were asked to rate non-pharmacological treatments (Figure 2c), most (for both the depression and the schizophrenia vignettes) regarded non-standard interventions (more physical or social activity; learn relaxation [including stress management, meditation or yoga courses]; reading about people with similar problems) as helpful and not harmful. On the other hand, most regarded admission to a psychiatric ward as harmful (depression, 62%; schizophrenia, 51%) and most regarded having electroconvulsive therapy (ECT) as harmful (depression, 72%; schizophrenia, 66%). For the depression vignette, psychotherapy was seen as helpful by 34% and harmful by 13%, compared with 55% helpful and 7% harmful for the schizophrenia vignette. The highest number of "don't know" responses was elicited for psychotherapy (16% for depression, 15% for schizophrenia) and for ECT (10% for depression and 14% for schizophrenia) (data not shown). As opinions about treatment might vary according to whether or not the respondent thought the person in the vignette had a mental health problem, the respondents were divided accordingly. The major difference in findings was that those who did not perceive a mental health problem were more likely to rate treatments as "neither helpful nor harmful" or to respond "don't know" . However, the rank ordering of treatments in terms of helpfulness was generally similar. Spearman rank correlation coefficients for the depression vignette were 0.82 (people), 0.90 (medicines) and 0.98 (treatments), and for the schizophrenia vignette they were 0.87 (people), 0.71 (medicines) and 0.98 (treatments). Prognosis All respondents were asked to give their views on prognosis with and without the professional help they thought most appropriate. For the depression vignette, 80% thought that there would be full recovery with help. If there was no help, 56% believed the person would get worse, and 5% that there would be full recovery. For the schizophrenia vignette, 69% believed that help would result in full recovery; if there was no help, 75% believed that the person would get worse, and 3% that there would be full recovery. Discussion Recognition of the presence of a mental disorder was high in our population sample, although only a minority gave the correct psychiatric label to their vignette. While it is not known whether there is any benefit to the public in being able to apply the correct psychiatric label, misidentifying a mental disorder as a physical one or as a problem unrelated to health may lead to inappropriate use or avoidance of health services. The major limitation in recognition is therefore seen in the 28% who thought the person described in the depression vignette did not have a mental disorder and the 16% who had the same opinion about the person in the schizophrenia vignette. When respondents were asked about the helpfulness of various people, GPs were rated very highly for both vignettes. Only half the respondents thought that a psychiatrist or psychologist would be helpful for the person in the depression vignette, a proportion less than that cited for GPs, counsellors, close friends, family, and telephone counselling. While psychiatrists and psychologists were rated as relatively more helpful for the person in the schizophrenia vignette, they were nevertheless less likely to be rated as helpful than counsellors or GPs. This suggests that public perceptions of mental health specialists need to be changed. Ratings given for the helpfulness of various treatments for depression are not consistent with the evidence of controlled trials, which have indicated that both antidepressant medication and psychotherapy are effective treatments. 10,11 Antidepressants were rated as helpful by 29% of our sample and as harmful by 42%, while psychotherapy was rated as helpful by 34% and harmful by 13%. Both were regarded as less helpful than treatments such as vitamins and minerals and special diets. The treatment with the highest negative rating was ECT. Although the patient described to the respondents could not be regarded as severely depressed enough to warrant ECT, 11 there is clearly a public perception that this treatment is harmful. The treatments that the public rated most highly were all non-standard in nature. These views may not be entirely misguided; there is evidence (e.g., from controlled trials) that physical exercise may have a positive effect on depression. 12 The findings were similar for the schizophrenia vignette. Although controlled trials show that antipsychotic medication is an effective treatment, 13 this was rated as helpful by 23% of the respondents and harmful by 34%; 20% did not offer an opinion. Similarly, admission to a psychiatric ward, which can be useful in the management of schizophrenia, 13 was rated as harmful by half the respondents. As with depression, non-standard interventions were the most likely to be rated as helpful. Despite these negative opinions of, or ignorance about, the helpfulness of many standard treatments, the public clearly sees the conditions described in the vignettes as treatable. The predominant belief that mental disorders are treatable has also been found in overseas surveys, 3,4 although a United States survey found that most respondents believed it possible to get better through one's own efforts. 5 There were some marked differences in responses to the depression and schizophrenia vignettes in terms of recognition, perceived helpfulness of treatments and prognosis. These differences show that the respondents did not see all mental disorders as the same and recognised that the condition described in the schizophrenia vignette required more vigorous intervention. Our results also indicate that the views of many members of the public diverge from those of health professionals, particularly mental health specialists. Such differences may lead to unwillingness to accept help from mental health professionals, or to a lack of adherence to advice given. Clearly, if mental disorders are to be recognised early and appropriate action taken, the level of mental health literacy in the population should be raised. There has been considerable interest in trying to improve the recognition and management of mental disorders in primary care, 10,14 but this knowledge needs to reach the consumers of services so that they can play a more effective role in the management of their own mental health. References Nutbeam D, Wise M, Bauman A, et al. Goals and targets for Australia's health in the year 2000 and beyond. Canberra: Australian Government Publishing Service, 1993. Kessler RC, McGonagle KA, Zhao S, et al. Lifetime and 12-month prevalence of DSM-III-R psychiatric disorders in the United States: Results from the National Comorbidity Survey. Arch Gen Psychiatry 1994; 51: 8-19. McKeon P, Carrick S. Public attitudes to depression: a national survey. Ir J Psychol Med 1991; 8: 116-21. Sims A. The scar that is more than skin deep: the stigma of depression. Br J Gen Pract 1993; 43: 30-31. Regier DA, Hirschfeld RM, Goodwin FK, et al. The NIMH depression awareness, recognition, and treatment program: structure, aims, and scientific basis. Am J Psychiatry 1988; 145: 1351-1357. Angermeyer MC, Matschinger H. Public attitude towards psychiatric treatment. Acta Psychiatr Scand 1996; 94: 326-336. Australian Bureau of Statistics. Population survey monitor, August 1995 (No. 4103.0). Adelaide: ABS, 1995. World Health Organization. The ICD-10 classification of mental and behavioural disorders. Diagnostic criteria for research. Geneva: WHO, 1993. American Psychiatric Association. Diagnostic and statistical manual of mental disorders (4th ed) (DSM-IV). Washington DC: APA, 1994. Depression Guideline Panel. Depression in primary care: Volume 2. Treatment of major depression. Clinical practice guideline, number 5. Rockville, MD: US Department of Health and Human Services, Public Health Service, Agency for Health Care Policy and Research, 1993. The Quality Assurance Project. A treatment outline for depressive disorders. Aust N Z J Psychiatry 1983; 17: 129-146. Byrne A, Byrne DG. The effect of exercise on depression, anxiety and other mood states: a review. J Psychosom Res 1993; 37: 565-574. The Quality Assurance Project. A treatment outline for the management of schizophrenia. Aust N Z J Psychiatry 1984; 18: 19-38. Ustun TB, Goldberg DP, Cooper JE, et al. A new classification for mental disorders with management guidelines for use in primary care: The ICD-10 PHC. Br J Gen Pract 1995; 45: 211-215. (Received 22 Feb 1996, accepted 4 Nov, 1996) Authors' details NHMRC Social Psychiatry Research Unit, The Australian National University, Canberra, ACT. Anthony F Jorm, PhD, DSc, Deputy Director; Ailsa E Korten, BSc, Research Officer; Patricia A Jacomb, MSc, Research Assistant; Helen Christensen, PhD, Fellow; Bryan Rodgers, PhD, Fellow; Penelope Pollitt, PhD, Research Fellow. No reprints will be available from the author. Correspondence: Dr A F Jorm, NHMRC Social Psychiatry Research Unit, The Australian National University, Canberra, ACT 0200. E-mail: Anthony. Jorm AT anu.edu.au - - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Anthony F Jorm · Ailsa E Korten · Patricia A Jacomb · Helen Christensen · Bryan Rodgers · Penelope Pollitt

End-of-life decisions in Australian medical practice Helga Kuhse, Peter Singer, Peter Baume, Malcolm Clark and Maurice Rickard MJA 1997; 166: 191 For editorial comment see Van Der Weyden and Ashby Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgement - References - Authors' details - - - ©MJA1997 Abstract Objective: To estimate the proportion of medical end-of-life decisions in Australia, describe the characteristics of such decisions and compare these data with medical end-of-life decisions in the Netherlands, where euthanasia is openly practised. Design: Postal survey, conducted between May and July 1996, using a self-administered questionnaire based on the questionnaire used to determine medical end-of-life decisions in the Netherlands in 1995. Participants: A random sample of active medical practitioners from all Australian States and Territories selected from medical disciplines in which there were opportunities to be the attending doctor at non-acute patient deaths, and hence to make medical end-of-life decisions. Main outcome measure: Proportion of Australian deaths that involved a medical end-of-life decision, using ratio-to-size estimation based on the sampled doctors' responses to the questionnaire. The response rate was 64%. Results: The proportion of all Australian deaths that involved a medical end-of-life decision were: euthanasia, 1.8% (including physician-assisted suicide, 0.1%); ending of patient's life without patient's concurrent explicit request, 3.5%; withholding or withdrawing of potentially life-prolonging treatment, 28.6%; alleviation of pain with opioids in doses large enough that there was a probable life-shortening effect, 30.9%. In 30% of all Australian deaths, a medical end-of-life decision was made with the explicit intention of ending the patient's life, of which 4% were in response to a direct request from the patient. Overall, Australia had a higher rate of intentional ending of life without the patient's request than the Netherlands. Conclusions: Australian law has not prevented doctors from practising euthanasia or making medical end-of-life decisions explicitly intended to hasten the patient's death without the patient's request. MJA 1997; 166: 191-196 Introduction In Australia, the practice of euthanasia or physician-assisted suicide (Box 1) is unlawful, except in the Northern Territory. It is, however, widely recognised in common law (in some Australian States and Territories in statute law) that mentally competent patients have a right to refuse medical treatment, and that doctors who comply with a patient's request for non-treatment are not generally deemed to have acted unlawfully or to have practised euthanasia or physician-assisted suicide, even if their action or omission was foreseen to lead to the patient's death. Before the Northern Territory Rights of the Terminally Ill Act 1995, the only country where doctors could openly practise euthanasia was the Netherlands. Although this practice is subject to criminal law in the Netherlands, it has been long accepted by strong public support, and the Dutch Parliament has recognised that doctors practising it should not be prosecuted if they comply with certain guidelines.1,2 In 1990, the Dutch Government appointed the Remmelink Commission to review the nationwide practice of euthanasia and other end-of-life medical practices. The investigators used three different methods to ascertain the incidence of these practices. In order to facilitate comparisons with our study, we summarise the findings of their questionnaire study.3 Of all deaths in the Netherlands in 1990 (approximately 129 000), 1.7% were the result of euthanasia and 0.2% were the result of physician-assisted suicide; these deaths complied with Royal Dutch Medical Association guidelines on euthanasia. However, in a clear violation of the guidelines, 1000 deaths (0.8%) involved the administration of drugs with the explicit intention of ending the patient's life, but without the patient's explicit request. In a second nationwide study of medical end-of-life practices in the Netherlands in 1995, by van der Maas et al.,4 the corresponding findings were: euthanasia, 2.3%; physician-assisted suicide, 0.2%; and ending of life without the explicit concurrent request of the patient, 0.7%. Although recent Australian surveys have reported on doctors' attitudes about medical end-of-life decisions,5 and doctors' attitudes to and practice of voluntary euthanasia,6,7 no study has examined the number of deaths in Australia involving medical end-of-life decisions. In this study, we sought to estimate the number of deaths involving a medical end-of-life decision in Australia, to describe the characteristics of such decisions, and to compare these data with those of the Dutch studies. A comparison of medical end-of-life decisions in the Netherlands with a country where euthanasia cannot be practised openly, such as Australia, would indicate whether the Netherlands has a higher rate of ending of life without the patient's explicit request. Australia and the Netherlands have a similar population size (18 million and 15.3 million, respectively) and comparable annual death rates (7.1 and 8.7 per thousand, respectively).8 In the Netherlands in 1995 there were 135 546 deaths,3 while in Australia there were 125 771 deaths from July 1994 to June 1995.9 Methods Ethical approval Ethical approval for this study was obtained from the Monash University Standing Committee on Ethics in Research on Humans. Questionnaire We used an English version of the retrospective questionnaire used by van der Maas et al.4 Our questionnaire was based on an authoritative translation provided by the Dutch researchers, so the terminology and meanings of the questions were comparable, and contained the original 24 items used in their survey. We considered anonymity to be essential because we were seeking information about conduct for which doctors would be liable to prosecution. Therefore, unlike the study by van der Maas et al.,4 we did not conduct interviews. Grouping euthanasia and physician-assisted suicide together, our questionnaire addressed all medical end-of-life decisions, as defined in Box 1. The questionnaire examined the medical action that preceded the death, the doctor's intention, whether an explicit request from the patient was involved, whether a wish had been expressed to hasten death, whether discussion took place with the patient or others, whether the patient was competent when making the request or when participating in discussions, and the estimated length of life shortened. Most questionnaires were completed carefully and consistently. (Copies of the questionnaire are available from the authors.) Medical practitioner sample We received the addresses of 3000 doctors taken at random from a list of 27000 Australian doctors that had been extracted from the Australian Medical Masterfile Database (Australasian Medical Publishing Company, Sydney). Each doctor on the list belonged to one of 27 medical disciplines where there would be the possibility of making a medical end-of-life decision (i.e., being the attending doctor at a non-acute death) (Box 2). The sample of doctors in the study by van der Maas et al.4 consisted of those who had attended deaths where the cause of death was highly likely to have involved making a medical end-of-life decision (as determined from death certificates). Australia does not have a national Death Certificate Register for identifying causes of death and attending doctors, as in the Netherlands. Therefore, the 27 medical disciplines (also extracted from the Australian Medical Masterfile Database) in our study were chosen to be as comparable as possible with the broader categories of doctors (cardiology, surgery, internal medicine, respiratory medicine [pulmonology], neurology, general practitioners and nursing home physicians) who were attendant to 87% of hospital deaths and nearly all deaths outside hospitals in the Netherlands.4 Between May 1996 and July 1996, we sent questionnaires to the random sample of 3000 doctors in the selected medical disciplines. The sampling method was chosen to reflect the wider distribution of doctors in Australia with regard to sex, age, medical discipline and State or Territory of residence. The response rate, after a second mailing to non-respondents, was 1918 questionnaires (64%). The initial questions on the questionnaire narrowed the field of respondents to include the 1361 doctors who had attended a death within the last 12 months. These doctors were asked to recall the most recent death they had attended during that period. The field was further narrowed by excluding doctors who, in respect of that death, had had no contact with the patient until after death or where the death had been sudden and totally unexpected. Of the remaining field of 1112 doctors who had attended a death where there was an opportunity to make a medical end-of-life decision (i.e., a non-acute death), 800 doctors made a decision intended either to shorten life or foreseen as probably or certainly shortening life, and 312 doctors did not make such a decision. Statistical analysis The percentages and confidence intervals regarding doctors were computed using standard formulas for the estimation of proportions under simple random sampling.10 The sampling scheme regarding deaths was equivalent to two-stage cluster sampling. Each selected doctor was asked for details regarding only the most recent death he or she had attended in the past 12 months. Thus, the percentages of deaths and corresponding confidence intervals were computed using the usual ratio-to-size estimator for such sampling.10,11 The virtue of the ratio-to-size estimator was that it could take into account differences in the rates of death that the different doctors in our sample attended in the normal course of their duties (each doctor was asked to indicate the number of deaths they would attend on average within a certain period). For example, oncologists and general practitioners in our sample were each asked about only one death, but the differences in the number of deaths they normally attend were taken into account by the ratio-to-size method when extra polated to percentages of Australian deaths. Surveyed doctors' responses were weighted in these statistical extrapolations in proportion to the number of deaths they normally attend. A consequence of the differential weightings involved in the ratio-to-size method, however, is that there is no simple way of deriving the proportion of deaths in Australia that were preceded by a medical end-of-life decision from our sample of doctors who reported on their decision with regard to the most recent death they had attended. Furthermore, the confidence intervals take into account possible differences in attitudes towards end-of-life decisions between doctors and the fact that each respondent was asked about only one death. Results Survey response rates From the 3000 doctors who were sent questionnaires, we received responses from 1918 doctors (64%). There was no significant difference in response rate for men versus women (chi-squared test, 3.03; 1 degree of freedom [df]), nor between the States and Territories (chi-squared test, 1.94; 7 df). The response rate did, however, differ significantly with age, ranging from 74.9% for the under-35 years age group to 50.5% for the 56-65 years age group (chi-squared test, 26.73; 4 df). The response rate also differed significantly between different categories of medical discipline: there was a higher response rate from doctors in Groups A and B (116 and 340 doctors, respectively), and a lower response rate from doctors in Group C (1265 doctors) (chi-squared test, 160.4; 2 df). One hundred and ninety-seven doctors either did not state their medical discipline or indicated that it did not fall into one of these groups. (Further data on respondents' medical discipline, age, sex and State or Territory of residence are available from the authors.) Medical end-of-life decisions: medical practitioner sample Box 3 shows the characteristics of the deaths reported by the 800 doctors in our study who made medical end-of-life decisions. There were no significant differences with regard to sex (chi-squared test, 0.94; 1 df), State or Territory of residence (chi-squared test, 1.07; 7 df) or medical discipline (chi-squared test, 4.06; 3 df) between the 800 doctors who made medical end-of-life decisions and the 312 who did not make such a decision. There was, however, a marginally significant difference in the age distribution (chi-squared test, 11.50; 4 df; P=0.02). There was a higher than expected number of doctors aged between 56-65 years who did not make such a decision. The medical end-of-life decisions reported by the 800 doctors were as follows: 26 doctors (3.2%) reported euthanasia; 51 doctors (6.4%) reported ending the patient's life without the patient's explicit request; 289 doctors (36.1%) reported making a decision not to treat, of which 55 doctors (19%) reported no intention to hasten death, and 234 doctors (81%) reported an explicit intention to hasten death; and 434 doctors (54.2%) reported alleviating the patient's pain with opioids in large doses, of which 335 doctors (77.2%) reported no intention to hasten death, and 99 doctors (22.8%) reported a partial intention to hasten death (Box 3). We are planning to publish further analysis of the data at a later date. Medical end-of-life decisions: proportions of Australian deaths Box 4 shows the proportion of Australian deaths (acute and non-acute) that involved a medical end-of-life decision. The results in Box 4 and the results discussed below are based on an extrapolation of the data from Box 3 by means of ratio-to-size estimation (see Methods). A medical decision either partly or explicitly intended to hasten death or not prolong life occurred in 36.5% (±3.5%) of all Australian deaths. In almost half (17.8% [±2.9%]), there had been no explicit request from the patient, nor had there been any discussion of ending the patient's life, and the doctor did not believe that the patient had expressed a wish for death to be hastened. Euthanasia and physician-assisted suicide An estimated 1.8% (±0.6%) of all Australian deaths were the result of euthanasia or physician-assisted suicide (of which an estimated 0.1% were cases of physician-assisted suicide). Ending of life without an explicit request from the patient An estimated 3.5% (±0.8%) of all Australian deaths involved termination of the patient's life without the patient's explicit request. There was some discussion with the patient -- although not an explicit request for death to be hastened -- in 38% of these cases. In virtually all of the remaining cases, the doctor did not consider the patient competent (i.e., capable of assessing his or her situation and making a decision about it). In 0.7% of all Australian deaths, attending doctors (who were asked to give as many reasons as applied) stated that they did not discuss with the patient the possible hastening of death by prescribing, supplying or administering drugs because the patient was unconscious, demented or mentally handicapped. In 0.5% of all Australian deaths, attending doctors felt that the act of hastening death was "clearly the best one for the patient", or that "discussion would have done more harm than good". Decisions not to treat An estimated 24.7% (±3.1%) of all Australian deaths involved a decision not to treat with the explicit intention of not prolonging life or of hastening death. Of these, less than one-tenth (or 2.2% of all Australian deaths) were in response to an explicit request from the patient, and in most cases (22.5% of all Australian deaths) there was no explicit request from the patient. In 3.2% of all deaths, the doctor believed that the patient had expressed a wish for death to be hastened, but there had been no discussion with the patient, and in 5% respondents did not indicate whether the patient was involved in the decision. Therefore, in 14.3% (±2.8%) of all Australian deaths, the death was preceded by a medical decision to withhold or withdraw treatment with the explicit intention of not prolonging life or of hastening death, despite the fact that the decision was not based on an explicit request from a patient, there was no discussion with the patient about whether to hasten death by the omission of treatment, and the doctor did not believe that the patient had expressed a wish for death to be hastened. In almost all of these cases (14.1% of all deaths) the doctor did not consider the patient capable of assessing his or her situation and making a decision about it. In 0.16% of all Australian deaths, the doctor did consider the patient capable of assessing his or her situation and making a decision about it, but intentionally hastened death by forgoing treatment, without discussing this with the patient. In 10.5% (±2.7%) of all Australian deaths, attending doctors (who were asked to give as many reasons as applied) stated that they did not discuss with the patient the possible hastening of death by withholding or withdrawing treatment because the patient was unconscious. Dementia or mental handicap was offered as the reason in 2.6% of all Australian deaths. In 1.6% of all Australian deaths, the attending doctor felt that the decision "was clearly the best one for the patient" or "discussion would have done more harm than good". Alleviation of pain and/or symptoms with opioids In 6.5% (±1.1%) of all Australian deaths, doctors prescribed opioids (morphine or a comparable drug) with a dual intention: in part, to alleviate pain and symptoms and, in part, to hasten death. Drug doses were large enough to have, in the judgement of the respondent and with regard to the particular death, a life-shortening effect. In 0.9% of all Australian deaths, doctors had partly intended to hasten death by alleviating pain and/or symptoms using opioids on the basis of an explicit request; and in 3.2% there was either some discussion with the patient, or the doctor believed that the patient had expressed a wish (but not an explicit request) for death to be hastened. In 2.4% of all deaths, doctors had partly intended to hasten death by this practice, despite the fact that there was no explicit request, no discussion with the patient, and the doctor did not believe that the patient had expressed a wish for death to be hastened. Amount of time by which life was shortened Medical decisions that were explicitly or partly intended to hasten death or not prolong life generally brought death forward by relatively short periods, according to doctors' estimates. Of the 24.7% (±3.1%) of all Australian deaths that involved a decision to forgo treatment with the explicit intention of hastening death or not prolonging life, the decision was estimated to hasten death by more than a week in 3.6% of all Australian deaths. Of the 5.3% of all Australian deaths that were caused by the prescription, supply or administration of drugs explicitly intended to hasten death, life was estimated to have been shortened by more than a week in 1.1% of all Australian deaths. Discussion One of the main findings of our study was that 30% (±3.3%) of all Australian deaths were preceded by a medical decision explicitly intended to hasten the patient's death: doctors prescribed, supplied or administered drugs with the explicit intention of ending the patient's life in 5.3% (±1%) of these deaths, and withdrew or withheld life-prolonging treatment with the explicit intention of not prolonging life or of hastening death in 24.7% (±3.1%) of these deaths. Our study shows that Australia had a significantly higher rate of intentional ending of life without the patient's consent, both through the administration of drugs and by withholding or withdrawing treatment, than the Netherlands. Overall, 36.5% (±3.5%) of all Australian deaths involved a medical decision either partly or explicitly intended to hasten death or not prolong life, compared with 19.5% of deaths in the Netherlands.4 Further comparisons with the data from the Netherlands are shown in Box 5. The difference in the rates of euthanasia between the two countries was not statistically significant. However, the rates of intentionally ending life without an explicit request from the patient were significantly higher in Australia than in the Netherlands (P < 0.0001). In 22.5% (±3.1%) of all Australian deaths, doctors withheld or withdrew treatment from patients, without the patient's explicit request, with the explicit intention of ending life. No comparable 1995 figure for the Netherlands was available (the 1991 figure was 5.3%), but the 1995 figure for all decisions to forgo treatment with an explicit intention of hastening death or not prolonging life in the Netherlands was 13.3%.4 If we classify euthanasia as all cases in which death is "intentionally accelerated by a doctor,"12 30% of all Australian deaths (or 37000 cases) would be cases of euthanasia. The comparable 1995 figure for the Netherlands was 16.6%. The response rate of 64% to our questionnaire was adequate to give a broad picture of medical end-of-life decisions in Australia, but all postal surveys are subject to some degree of non-response bias. The validity of our observations and comparisons is limited by the degree to which our study can be compared with the studies from the Netherlands. Although we strove to obtain a sample population of Australian doctors as comparable as possible to the sample in the study by van der Maas et al.,4 the 27 medical disciplines we selected may not have matched exactly the groups of doctors in their study. Furthermore, in our study there was a higher response rate from doctors whose medical discipline belonged to Groups A and B, and a lower response rate from those in Group C (Box 2). An analysis of the responses of doctors in each of these categories indicates that, in so far as this response bias had any effect on our results, this effect would have been to reduce the reported rate of euthanasia and ending of a patient's life without an explicit request. Cultural differences between Australia and the Netherlands could have accounted for some of the differing responses to the questionnaire. In the Netherlands, the community has a different relationship with primary care doctors compared with Australians, which may account for some of the differences in results. In the Netherlands, most primary care is provided by the huisarts ("home doctor"), the general practitioner or family doctor, either in the patient's home or in the doctor's home surgery. All Dutch patients have a personal huisart, who usually serves a practice of about 2300 people, lives in the area and makes frequent house calls when a patient is ill. This allows for close and enduring contact between the doctor and the patient, and distinguishes the delivery of primary care in the Netherlands from the increasingly institutionalised delivery of primary care in Australia. However, our study undermines suggestions that the rate at which doctors intentionally end patients' lives without an explicit request is higher in a country where euthanasia is practised openly (the Netherlands) than in a comparable country which has not allowed euthanasia to be practised openly, such as Australia. Although Australian law recognises a right to refuse treatment, it generally prohibits the intentional termination of life, whether by act or omission.13 Our findings, together with the previously cited studies of doctors in Victoria and New South Wales,6,7 suggest that Australian law has not prevented the practice of euthanasia or the intentional ending of life without the patient's consent. Our study shows that, while 30% (±3.3%) of all Australian deaths were preceded by an action or omission explicitly intended to end the patient's life, in only 4% was the decision taken in response to an explicit request from the patient. Far more doctors in our sample intentionally hastened death by forgoing (withholding or withdrawing) treatment than by prescribing, supplying or administering drugs with the explicit intention of ending life. For the purposes of this comparative study, we used the same narrow definition of euthanasia (the administration of drugs with the explicit intention of ending the patient's life, at the patient's request) that was used by van der Maas et al.4 Traditionally, "euthanasia" has been defined more broadly: "an action or an omission which of itself or by intention causes death, in order that all suffering may in this way be eliminated."14 This study suggests that the contemporary focus on euthanasia in the narrow sense may be too limited, at least if the aim is to prevent patients having their lives shortened by medical end-of-life decisions being made without their consent. Our study raises the question of why some Australian doctors choose intentionally to end the lives of some of their patients without the patients' consent, especially in situations where the patient is competent and could be consulted. While this issue remains the subject of further empirical research, it may be that, because existing laws prohibit the intentional termination of life, doctors are reluctant to discuss medical end-of-life decisions with their patients lest these decisions be construed as collaboration in euthanasia or in the intentional termination of life. Acknowledgement This study was supported by a grant from the National Health and Medical Research Council. Responsibility for the views expressed is that of the authors alone. References The Royal Dutch Medical Association issues revised guidelines on euthanasia. Int Digest Health Legislation 1996; 47: 401-405. van der Wal G, Dillmann RJM. Euthanasia in the Netherlands. BMJ 1994; 308: 1346-1349. van der Maas PJ, van Delden JJM, Pijnenborg L. Euthanasia and other medical decisions concerning the end of life. Lancet 1991; 338: 669-674. van der Maas PJ, van der Wal, Haverkate I, et al. Euthanasia, physician-assisted suicide, and other medical practices involvingthe end of life in the Netherlands, 1990-1995. N Engl J Med 1996; 335: 1699-1705. Waddell C, Clarnette RM, Smith M, et al. Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia. Med J Aust 1996; 165: 540-544. Kuhse H, Singer P. Doctors' practices and attitudes regarding voluntary euthanasia. Med J Aust 1988; 148: 623-627. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-144. Encyclopaedia Britannica 1996 Year Book. Chicago: Encyclopaedia Britannica, Inc. 1996: 554, 679. Australian Bureau of Statistics. Australian Demographic Statistics, June 1996. Canberra: AGPS, Cat. No. 3101.0. Cochran WG. Sampling techniques. 2nd edition. New York: Wiley, 1963: section 3.2, 11.6: 49-52, 300-303. Scheaffer RL, Mendenhall W, Ott L (editors). Elementary survey sampling. 4th edition. Boston: PWS-Kent, 1990, section 9.5: 294-296. Keown J. Euthanasia in the Netherlands: sliding down the slippery slope? In: Keown J, editor. Euthanasia examined: ethical, clinical and legal perspectives. Cambridge: Cambridge University Press, 1995: 261-296. Crimes Act 1900 (NSW), s. 19(1)(a). Sacred Congregation for the Doctrine of the Faith: Declaration on Euthanasia, Vatican City, 1980: 6. (Received 20 Dec 1996, accepted 22 Jan 1997) Authors' details Centre for Human Bioethics, Monash University, Clayton, VIC. Helga Kuhse, PhD, Director; Peter Singer, FAHA, FASSA, Deputy Director; Maurice Rickard, PhD, NHMRC Research Officer. School of Community Medicine, University of New South Wales, Sydney, NSW. Peter Baume, MD, FAFPHN, Professor. Department of Mathematics, Monash University, Clayton, VIC. Malcolm Clark, PhD, Senior Lecturer. No reprints will be available from the author. Correspondence: Associate Professor H Kuhse, Centre for Human Bioethics, Monash University, Clayton, VIC 3168. E-mail: helga.kuhse AT arts.monash.edu.au - - - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia. 1: Definitions of medical end-of-life decisions4 Euthanasia:The administration of drugs with the explicit intention of ending the patient's life, at the patient's request. Physician-assisted suicide:The prescription or supplying of drugs with the explicit intention of enabling the patient to end his or her own life. Ending of life without the patient's explicit request:The administration of drugs with the explicit intention of ending the patient's life, without a concurrent, explicit request by the patient. Alleviation of pain and symptoms with opioids: The administration of doses large enough so that there was a probable life-shortening effect. A decision not to treat:The withholding or withdrawing of potentially life-prolonging treatment. 2: Medical disciplines in Australia that involve the possibility of doctors making medical end-of-life decisions* Group A: Emergency medicine, intensive care, neonatology, medical oncology, palliative care, renal medicine, cardiothoracic surgery. Group B: Cardiology, clinical haematology, geriatric medicine, general medicine/general physician, immunology, infectious diseases, radiation oncology, respiratory medicine, abdominal surgery, neurosurgery, vascular surgery, gynaecological oncology, otorhinolaryngology. Group C: Breast surgery, endocrinology, gastroenterology, general practice, general surgery, neurology, urological surgery * Participating doctors were asked to nominate the group containing the medical discipline in which they practise. Medical disciplines were extracted from the Australasian Medical Masterfile Database. 3: Characteristics of medical end-of-life decisions reported by 800 Australian doctors 4: Estimated proportion of medical end-of-life decisions in Australia 5: Comparison of medical end-of-life decisions in Australia and the Netherlands*

Helga Kuhse · Peter Singer · Peter Baume · Malcolm Clark · Maurice Rickard

Hepatitis B and C in New South Wales prisons: prevalence and risk factors Tony G Butler, Kate A Dolan, Mark J Ferson, Linda M McGuinness, Phillip R Brown and Peter W Robertson MJA 1997; 166: 127 For comment see Crofts Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Laboratory methods - Statistical methods - Results - Participants - Serology and risk factors - Discussion - Acknowledgements - References - Authors' details - ©MJA1997 Abstract Objectives: To determine the prevalence of hepatitis B virus (HBV) and hepatitis C virus (HCV) infection among inmates entering the New South Wales correctional system and to examine risk factors for infection. Design: Cross-sectional survey. Setting: Reception Centre at Long Bay Correctional Centre, Sydney, New South Wales, June to December 1994. Participants: 408 adult male inmates received at the reception centre (28% of the 1450 new inmates eligible for compulsory HIV testing). Outcome measures: Presence of HBV core and surface antibody and surface antigen; HCV antibody; risk factors; inmates' knowledge about risk factors. Results: 37% of inmates tested positive for HCV antibody, 31% for HBV core antibody and 3.2% for HBV surface antigen (indicating recent infection or carrier status). Among those who reported a history of injecting illegal drugs, rates rose to 66% for HCV antibody and 43% for HBV core antibody. Prevalence of HBV and HCV antibodies was similar in Aboriginal and non-Aboriginal inmates, but HBV antigen carrier rate was significantly higher among Aboriginals (12% versus 2.2%). Knowledge about hepatitis risk factors was poor (only 20% named injecting drug use), although recidivists were significantly better informed than those new to the correctional system. Multivariate analysis identified injecting drug use, past exposure to hepatitis B virus and previous imprisonments as significant predictors for HCV infection, and age over 25 years and HCV antibodies for HBV infection. Conclusions: Results suggest that about a third of adult male prisoners entering the NSW correctional system may have been infected with HBV or HCV. Measures such as education about hepatitis risk factors and HBV vaccination are needed to reduce hepatitis transmission in this population. MJA 1997; 166: 127-130 Introduction The reported high prevalence of hepatitis B and C in prison populations is attributed to the disproportionate number of people in prisons who engage in risk behaviours, particularly injecting illegal drugs.1-8 It is estimated that up to 60% of inmates are committed for drug-related offences.9 Further, an Australian study estimated that during their incarceration 25%-44% of inmates occasionally injected illegal drugs, 14%-34% engaged in occasional anal intercourse and 5%-18% did both.10 Among inmates entering the Victorian prison system in 1991 and 1992, 39% were positive for hepatitis C antibody (including 64% of those reporting a history of injecting illegal drugs), 33% were positive for hepatitis B antibody and 2.5% for hepatitis B surface antigen.11 There are no recent studies of the prevalence of infection with hepatitis B and C viruses (HBV and HCV) in New South Wales prisons. Our study aimed to determine the prevalence of HBV and HCV infection among inmates entering the NSW correctional system and to examine the risk factors associated with these infections. Methods The study was performed at the Reception Centre at Long Bay Correctional Centre, Sydney, NSW, from June to December 1994. The Reception Centre receives about 51% of adult males entering the NSW correctional system, most of whom are then transferred to other prisons. At the time of our survey, all inmates entering NSW prisons were routinely screened for the human immunodeficiency virus (HIV) by public health nurses of the Corrections Health Service. Inmates were also invited to participate in the hepatitis survey. Recruitment depended on the nurses' availability to enrol inmates during HIV screening, and in busy periods it was not always possible to enrol all new inmates. No information was sought from those who did not agree to participate. Inmates who agreed to participate were briefed on the project and informed that a consent form had to be signed, a blood specimen was needed, and a risk factor questionnaire would be administered by the nurse. Nurses also asked inmates to describe ways in which hepatitis can be transmitted. All inmates who tested positive for HBV and HCV antibodies were counselled by public health nurses. HCV-positive inmates routinely receive follow-up liver function tests. Inmates who reported having had HBV vaccination were given booster vaccination if antibody tests indicated they were not immune. All other inmates who tested negative for HBV core antibody were offered hepatitis B vaccination. Ethics approval for the study was granted by the Eastern Sydney Area Health Service Ethics Committee and the NSW Department of Corrective Services. Laboratory methods HBV core antibody (indicating past exposure) was tested with an anti-HBc enzyme immunoassay kit (General Biologicals, Taiwan). Samples positive for HBV core antibody were tested for HBV surface antigen (indicating carrier status) with the HBsAg-enzyme immunoassay (Murex, Dartford); positive results were confirmed by HBs reverse passive haemagglutination assay (Serodia, Tokyo). Inmates who reported having been vaccinated against hepatitis B were tested for HBV surface antibody with the HBsAb-enzyme immunoassay (General Biologicals, Taiwan). A level of 30 IU/mL was considered the minimum necessary for immunity. HCV antibody was detected with the Innotest HCVAbIII assay (Innogenetics, Belgium). Reactive samples were retested in duplicate and, if again reactive, were tested with anti-HCV (Murex, Dartford). Samples that were reactive in each of the two types of assay were classified as positive, and those with discrepant results as equivocal. Statistical methods Relative risks were calculated with the statistical software Epi Info-6,12 and logistic regression was performed with the software SPSS-6. 13 The c 2 test was used to test for association between Aboriginality and serostatus. Results Participants About 1450 inmates were tested for HIV at the Long Bay Reception Centre between June and December 1994. Of these, 410 adult males (28%) consented to be screened for HBV and HCV antibodies. It is not known how many of the remainder were not invited to participate and how many refused. Two inmates were counted twice as they were released and reincarcerated during the study period. Results of their second tests were excluded from the analysis. The 408 subjects were aged 17-73 years (mean, 30.6 years; standard deviation, 10.1), and 296 (73%) had been imprisoned previously. Country of origin was: Australia, 80%; Europe, 8.6%; New Zealand and the Pacific Islands, 3.5%; Asia, 2.7%; the Middle East, 2.7%; and elsewhere or unknown, 2.5%. Forty-one inmates (10%) identified themselves as Aboriginal. Serology and risk factors Prevalence of HBV and HCV antibodies and HBV antigens is shown in Box 1 (below). About a third of inmates were positive for HBV core antibody (31%) or for HCV antibody (37%), with 21% positive for both. Among those who reported having received HBV vaccination, only 34% had HBV surface antibody levels (indicating immunity). No significant differences were found between Aboriginal and non-Aboriginal inmates in prevalence of HBV core and HCV antibodies. However, the HBV carrier rate was significantly higher among Aboriginals (12% versus 2.2%; c2 =11.8; P < 0.001). Among those reporting hepatitis B vaccination, more Aboriginals (50%) than non-Aboriginals (32%) had developed immunity, but the difference was not significant. The association between risk behaviours and HBV and HCV infection is shown in Box 2. The risk of each infection was significantly increased by a history of injecting drug use, previous imprisonment, sharing of injecting equipment, age over 25 years, injecting drug use during previous imprisonment, and tattooing (P< 0.05 or less). Risk also increased significantly with increasing numbers of previous imprisonments (P< 0.01 or less). Risk of HCV infection was also significantly increased by tattooing, sex with an injecting drug user and presence of HBV antibodies (P< 0.001). Among the 67 inmates who reported injecting drug use during a previous imprisonment, 77% were positive for HCV antibody and 56% for HBV antibody. In addition, among the 150 inmates positive for HCV antibody, only 14 (9%) did not report a history of injecting drug use. The following independent variables were entered into a logistic regression model, with HBV and HCV infection as separate outcome variables: injecting drug use, sex with an injecting drug user, tattoos, Aboriginality, age group (over 25 years versus 25 years and under), previous imprisonment, and HBV or HCV infection. For HCV infection, significant predictors were injecting drug use (odds ratio [OR], 19.9; P< 0.001), presence of HBV antibody (OR, 5.6; P< 0.001), and previous imprisonment (OR, 3.9; P< 0.001). For HBV infection, significant predictors were presence of HCV antibody (OR, 6.2; P< 0.001), and age over 25 years (OR, 3.4; P< 0.001). Among the 85 inmates positive for both HBV and HCV antibodies, 83 (98%) reported previous imprisonment, 78 (92%) reported injecting drug use, 40 (47%) reported sharing injecting equipment, 64 (75%) had tattoos, and 31 (36%) reported being tattooed in prison. Inmates' knowledge of risk factors for hepatitis B and C transmission is shown in Box 3 (below). Few inmates were knowledgeable about risk factors, with injecting drug use nominated by only 20% and tattooing by only 2%. However, those who had been imprisoned previously were significantly more likely to identify injecting drug use as a risk factor than those new to the correctional system, and significantly less likely to answer "no idea" about risk factors. Discussion Our results agree with those of a 1991-1992 study of Victorian prison inmates.11 We found that 37% of inmates were positive for HCV antibodies (39% in Victoria), 31% for HBV antibodies (33% in Victoria), and 3.2% for HBV surface antigen B (2.5% in Victoria). Our results also agree with those of two Victorian studies, which found rates of 62% and 68%, respectively, for HCV infection among injecting drug users.8,14 Extrapolating our results to the current NSW male prison population of over 6000 implies that almost 2000 inmates are likely to have been exposed to HBV, about 200 are HBV carriers, and over 2000 are HCV-antibody-positive. In contrast, there were 25 HIV-positive inmates in NSW correctional centres at the time of the study (0.4%; 23 male and 2 female) (unpublished data). NSW prison inmates are offered hepatitis B vaccination if their sentences exceed six months and they are considered "at risk". However, inmates with shorter sentences may also be at risk. We believe that all inmates have the right to be protected from possible infection and that all should start a course of hepatitis B vaccination on entry to the correctional system. It may be appropriate to use recently described accelerated vaccination schedules, which provide protective levels of anti-hepatitis B surface antibody relatively quickly.15 In addition, if hepatitis B vaccination courses are not completed in prison, inmates should be educated about the need to complete them after release. We found that among the 108 inmates (26%) who reported having had hepatitis B vaccination only a third were immune, possibly because of failure to complete the recommended vaccination schedule. Vaccination history could not be verified. We found that previous imprisonment was a significant risk factor for HCV infection, suggesting that measures to minimise the spread of hepatitis within prisons are essential. In addition, as many injecting drug users spend time in prison, it is an appropriate point for intervention to break the cycle of infection by educating them about risks for hepatitis transmission and providing vaccination. Prison education programs seem to have improved awareness about transmission of hepatitis, as inmates with a prison history were more likely to know the role of injecting drug use and less likely to have "no idea" about hepatitis transmission. However, knowledge was still poor, and only 2% of inmates identified tattooing as a risk factor for hepatitis transmission, which is of concern given the popularity of tattooing in this population. The link between tattooing and HCV infection has been identified elsewhere,16,17 and should receive more emphasis in hepatitis education programs. The recent decision by the NSW Department of Corrective Services to make condoms available in prisons may reduce hepatitis transmission. Other measures, such as removing obstacles for accessing bleach, and needle exchange, should also be considered in the fight to curb the spread of hepatitis. Our findings suggest that chronic hepatitis may become one of the prison system's major health concerns over the next two decades. Acknowledgements The study was funded in part by a grant from the NSW Health Department AIDS/Infectious Diseases Branch. We wish to thank the nursing staff at the NSW Corrections Health Service for assistance in data collection (Amanda Christensen, Sheryl Frewin, Marion Grey, Cherylyn Jesson, Linda Kemp, Jodie Lee, and Sandra Parsons). References Acedo A, Campos A, Bauza J, et al. HIV Infection, hepatitis, and syphilis in Spanish prison [letter]. Lancet 1989; 2: 226. Hull HF, Lyons LH, Mann JM, et al. Incidence of hepatitis B in the penitentiary of New Mexico. Am J Public Health 1985; 75: 1213-1214. Koplan JP, Walker JA, Bryan JA. Prevalence of hepatitis B surface antigen and antibody at a state prison in Kansas. J Infect Dis 1978; 137: 505-506. Melico-Silvestre A, Pombo V, Pereira A, et al. Seroepidemiological survey of transmissible infections in Portuguese prisoners [letter]. AIDS 1991; 5: 780-781. Decker M, Vaughn W, Brodie J, et al. Seroepidemiology of hepatitis B in Tennessee prisoners. J Infect Dis 1984; 150: 450-458. Chiaramonte M, Trivello R, Renzulli G, et al. Hepatitis B virus infection in prisons. J Hyg Camb 1982; 89: 53-58. Vlahov D, Nelson K, Quinn T, Kendig N. Prevalence and incidence of hepatitis C virus infection among male prison inmates in Maryland. Eur J Epidemiol 1993; 9: 566-569. Fairley CK, Leslie DE, Nicholson S, et al. Epidemiology and hepatitis C virus in Victoria. Med J Aust 1990; 153: 271-273. Corrections Health Service. Strategic Plan 1993-1998. Sydney: NSW Health Department, 1994. Douglas RM, Gaughwin MD, Ali RL, et al. Risk of transmission of the human immunodeficiency virus in the prison setting [letter]. Med J Aust 1989; 150: 722. Crofts N, Stewart T, Hearne P, et al. Spread of blood borne viruses among Australian prison entrants. BMJ 1995; 310: 285-288. Epi Info [computer program], version 6.0. Atlanta, Ga: Centers for Disease Control, 1994. SPSS-6: Statistical package for the social sciences [computer program], version 6. Chicago, Ill: SPSS Inc, 1994. Crofts N, Hopper J, Bowden S, et al. Hepatitis C virus infection among a cohort of Victorian injecting drug users. Med J Aust 1993; 159: 237-241. Bayas J, Bruguera M, Martin V, et al. Hepatitis B vaccination in prisons: the Catalonian experience. Vaccine 1993; 11: 1441-1444. Kaldor J, Archer, G, Buring M, et al. Risk factors for hepatitis C virus infection in blood donors: a case-control study. Med J Aust 1992; 157: 227-230. Holsen DS. Prevalence of antibodies to hepatitis C virus and association with intravenous drug abuse and tattooing in a national prison in Norway. Eur J Clin Microbiol Infect Dis 1993; 12: 673-676. (Received 10 Jan, accepted 21 Oct, 1996) Authors' details New South Wales Health Department, AIDS/Infectious Diseases Branch, Sydney, NSW. Tony G Butler, MSc, Public Health Officer. National Drug and Alcohol Research Centre, University of New South Wales, Sydney, NSW. Kate A Dolan, BSc, Research Officer. South Eastern Sydney Area Health Service, Sydney, NSW. Mark J Ferson, FRACP, FAFPHM, Director of Public Health. NSW Corrections Health Service, Long Bay Correctional Centre, Sydney, NSW. Linda M McGuinness, Grad Dip HSc, RN, Assistant Director of Nursing; Phillip R Brown, MBA, FAFPHM, Chief Executive Officer. Microbiology Department, Prince of Wales Hospital, Sydney, NSW. Peter W Robertson, PhD, Serologist. No reprints will be available. Correspondence: Mr T G Butler, NSW Health Department, AIDS/Infectious Diseases Branch, Locked Bag 961, North Sydney, NSW 2059. - To top of article - ©MJA 1997 <URL: http://www.mja.com.au/> © 1997 Medical Journal of Australia.

Tony G Butler · Kate A Dolan · Mark J Ferson · Linda M McGuinness · Phillip R Brown · Peter W Robertson

Readers may print a single copy for personal use. No further reproduction or distribution of the articles should proceed without the permission of the publisher. For permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia". Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Author's details Abstract Objective: To ascertain the prevalence of childhood sexual abuse (CSA) in a community sample of Australian women. Design: Retrospective study, done in 1994, of cross-sectional data on the prevalence of CSA, collected as part of a larger two-stage case-control study of the possible relationship between CSA and alcohol abuse. Data were appropriately weighted to adjust for the different selection probabilities of cases and controls. Participants: 710 Women randomly selected from Australian federal electoral rolls. Results: One hundred and forty-four women (20%) had experienced CSA. In 14 of these 144 women (10%), the abuse involved either vaginal or anal intercourse (i.e., 2% of the sample population experienced such abuse). The mean age at first episode of CSA was 10 years, and most (71%) of the women were aged under 12 years at the time. Perpetrators of the abuse were usually male (98%) and usually known to the child; 41% were relatives. The mean age of abusers was 34 years, with a median age difference of 24 years from that of the abused individual. Only 10% of CSA experiences were ever reported to the police, a doctor or a helping agency (e.g., community organisations, such as sexual assault services). Conclusion: The high rates of CSA (estimated to be 20% of all women) and low rates of reporting (10%) indicate the need for general practitioners and other health professionals to be aware that a history of such abuse may be common in women in the general population. MJA 1997; 166: 65-68 Introduction Community-based studies in North America, the United Kingdom and New Zealand have shown that, for women, the prevalence of at least one incident of sexual contact with an adult before age 18 years ranges from 6% to 62%. 1-8 In an Australian study examining the extent of childhood sexual abuse (CSA) among social science students, 28% of the female students and 9% of the male students reported at least one such incident before the age of 16 years. 9 Official figures on the incidence of child abuse (including physical and sexual abuse and neglect) show that, in 1992-93, 59 122 cases were reported and investigated throughout Australia. Of these cases, 27 196 (46%) were officially substantiated, and the number of child sexual abuse cases was 5979 (22%). 10 Because of the secrecy and shame surrounding sexual abuse, the criminal sanctions against it, and the young age and dependent status of the child, it is likely that official statistics seriously underestimate its true extent. 11 To determine the true extent of CSA, prevalence studies that rely on retrospective reports of adult subjects are needed; this study presents epidemiological data on the prevalence of CSA in a community sample of Australian women. Methods Participants recruited The current study was part of a larger two-stage case-control investigation (conducted in 1994) into the relationship between CSA and alcohol abuse in women. Stage 1 of the study involved a postal questionnaire sent to 6000 women randomly selected from Australian federal electoral rolls. Approval for the study was provided by the ethics committee of the Australian National University. A total of 3958 (66%) valid responses were received. Women who had an alcohol problem were identified as cases from their answers to this questionnaire. Stage 2 of the survey involved sending all women identified as having an alcohol problem ( n= 184) and a random selection of controls (i.e., women identified as not having an alcohol problem [ n= 910]) a second questionnaire, which explored childhood sexual experiences. This paper reports the results of analysis of the responses to this second questionnaire. Questionnaire The questions used to ascertain the prevalence of CSA were based on those developed by Wyatt 2 . In addition to the questions on sexual experiences shown, questions were also asked about other areas, including family background and physical abuse. Women who said they had had sexual experiences before age 16 were asked about the sexual experience, including information on the type of abuse; age at the time of abuse; relationship to the abuser; age of the abuser; frequency and period of the abuse (the period being obtained by subtracting the age at first episode from age when the abuse stopped); whether coercion was used; whether the abuse was disclosed to anyone; and the self-perceived short- and long-term effects of the abuse. The effects of the abuse are dealt with in Fleming et al. (unpublished data) and Fleming et al. 12 If the women had told anyone about the abuse, they were asked whom and when they had told. Definition of childhood sexual abuse CSA was defined as all experiences of sexual contact occurring before the age of 12 with a person five or more years older, irrespective of consent , and all experiences of sexual contact occurring between age 12 and 16 years with a person five or more years older that were not wanted or were distressing. Sexual contact was defined as: touching or fondling the child's body; attempts to have the child arouse the adult, or touch his/her body in a sexual way; the adult rubbing his/her genitals against the child's body in a sexual way; touching the child's genitals with the mouth, or having the child touch the adult's genitals with the mouth; attempts to have anal or vaginal intercourse with the child; and completed anal or vaginal intercourse. For each episode, there was a progressive range of possible experiences, such as touching of the genitals or breasts to intercourse. Sample and statistical analysis A response rate of 65% ( n = 710) was obtained, with the final sample comprising 124 of 184 women identified as cases (67%) and 586 of 910 women (64%) as controls. To estimate the underlying prevalence of CSA in the population, the data were weighted to account for the different probabilities of selection for cases and controls. The controls received higher weighting than the cases (who were more likely to be selected in the sample because of the original design). The HLOGIT and HREG procedures in STATA Release 4 for Windows 13 were used to perform logistic and ordinary regressions on the weighted data and to obtain Huber standard errors, which were then used to obtain Wald statistics and corresponding P values. The significance testing thus allowed for individuals in the sample having different probabilities of selection. Results Respondents to the survey showed a demographic distribution similar to that recorded in the Australian Bureau of Statistics (ABS) census data. 14 Childhood sexual experiences Two hundred and ninety four of the 710 women (41%) responded that they had had at least one of the sexual experiences at least once before the age of 16 years. For 45 (6%) of these women, the experiences were categorised as consensual sexual experiences with peers (a peer being defined as a person less than five years older than the subject). Accordingly, 249 (35%) women reported some sexual abuse or experience that was unwanted or distressing during childhood. The sexual experiences were divided into four categories: non-contact (exposure and masturbation) (n = 87, 12%), consensual with peers (n = 45, 6%), unwanted with peers (n = 18, 3%), and unwanted sexual experiences with an adult that involved at least genital contact (which is defined as CSA and is the group on which the analyses are based) (n = 144, 20.3%; 95% CI = 17.3%-23.5%). A total of 13 women (2%) did not answer any of the questions on childhood sexual experiences. There was no significant difference (t = 1.63; P = 0.11) in mean current age between women who stated that they hadexperienced CSA (38.6 years; 95% CI, 36.7-40.4; range, 18 to 74 years) and women who had had no experience of CSA (40.3 years; 95% CI, 39.2-41.5; range, 17 to 79 years). To gain a measure of severity of abuse in the women (n =144) with CSA, sexual experiences were classified according to the most invasive act perpetrated. As shown in Box 2, 10% of these 144 women stated that intercourse had occurred and a further 17% stated that the abuser had attempted intercourse. From the sample group of 710 women, this extrapolates to 2% of the total Australian population of women having experienced CSA involving intercourse. Frequency and period of CSA The Figure shows the number of abuse episodes and Box 3 shows the frequency in women abused more than once. The period of abuse was less than one year for 57% of episodes, less than two years for 14% of episodes, and more than two years for 29% of episodes. Characteristics of individuals who experienced CSA CSA was rarely stated to have occurred before age five years. Most abuse (102/144 [71%]) occurred up to age 12 years, with the mean age at first abuse being 10 years (SD, 3.5 years). No significant differences were found for age at first abuse and relationship to the abuser. The rate of CSA reported in this study was two to four times higher for women who worked part-time (OR, 2.15; 95% CI, 1.24-3.71) or were students (OR, 4.44; 95% CI, 1.56-12.44) than for women who were either unemployed or at home. Women who were separated or divorced were more likely to have experienced CSA than women who were not separated or divorced (OR, 2.27; 95% CI, 1.12-4.64). There was evidence for a quadratic relationship with age (chi-squared = 4.1, df=1, P = 0.04), with prevalence increasing to approximately age 38 and then decreasing. There was no significant relationship for country of birth (Australia versus other), highest qualification, whether or not they had children, or number of children. Characteristics of the abuser Men were by far the most frequent abusers -- women accounted for only two reports. The mean age of abusers was 33.5 years (95% CI, 31.0-36.0; range, 11-70 years). Almost two-thirds of the abusers (83/144 [58%]) were more than 20 years older than the abused individual at the time of the abuse. The median age difference between the abused and the abuser was 24 years (range, 5-64 years). Most respondents (120/144 [83%]) stated their relationship to the abuser. Only 8% (11/143) of abusers were strangers. ( Note: Discrepancies in total group numbers arise from missing data.) Forty-one per cent of abusers (58/143) were family members (biological relatives, such as fathers, grandparents, uncles, siblings, and cousins, as well as stepfathers and adoptive fathers). Although biological fathers were more often stated to be abusers than step fathers, more women grew up with a biological father. Children who grew up without any father were the most likely to have experienced CSA (OR, 3.8; 95% CI, 1.1-13.8), followed by children with stepfathers (OR, 1.9; 95% CI, 1.0-3.6) and children who grew up with their biological father (reference group). The frequency of CSA was significantly different in women abused by relatives and those abused by non-relatives. For the 55 women who were abused once, 37 (70%) were abused by someone outside the family. When the abuser was a relative, the abuse was significantly more likely to have occurred regularly (daily or weekly, 14/25 [56%], and fortnightly, monthly or annually, 27/40 [68%]) (chi-squared = 13.7, df = 2, P = 0.001). Those abused by a relative were significantly more likely to have been abused more often (two to five times, 15/27 [56%]; six to 10 times, 6/12 [50%]; more than 10 times, 21/24 [88%]) than those abused by non-relatives (chi-squared = 16.6, df = 3, P = 0.001). Coercion Most women (102/143 [72%]) stated that some form of coercion was used; most commonly, they were frightened into compliance. The data were re-coded to provide a measure of the severity of force used: 92/143 (64%) said there had been verbal threats and threats of violence; 10/143 (7%) said there had been actual violence; and 41/143 (29%) said no form of coercion was used. Disclosure More than half (75/144 [52%]) of the women had disclosed the abuse. A further five women had tried to disclose the abuse, but their attempts to do so were unsuccessful. Of these 80 women, almost one-third (23 [28%]) disclosed, or tried to disclose, at the time of the CSA, seven (9%) within the first year, and 14 (18%) between one and 10 years later; almost half (36 [45%]) did not disclose until at least 10 years after the first abuse episode. There were no significant differences between age at first abuse experience and whether or not the women disclosed the abuse (chi-squared = 1.0, df = 1, P = 0.3). However, there were significant differences in the timing of disclosure (within one year, one to 10 years, more than 10 years) by age at time of abuse. Girls aged under 12 years at the time of the abuse were less likely to tell someone within a year of the abuse than were girls aged over 12 years (chi-squared = 7.8, df = 2, P = 0.02). Mothers were the most frequently told (39/80 [49%]), followed by friends (25/80 [32%]), and siblings (23/80 [29%]). Fewer than 10% of women (7/80) reported or had the abuse reported to either the police, a doctor or a helping agency (e.g., community organisations, such as sexual abuse services). Twenty-three per cent (17/75) stated that disclosure had stopped the abuse, compared with 22% (16/75) who said it had not. ( Note: More than one answer was possible for the questions about who was told and the reasons for prevention of disclosure.) When the women were asked what prevented disclosure, by far the most common reason given was embarrassment or shame (47/80 [46%]), followed by the belief that the other person would not be able to help them (23/80 [23%]), or would somehow blame or punish them for the abuse (19/80 [18%]). No significant differences in disclosure rates were found by relationship to abuser. Rates of disclosing abuse, examined by current age of the women, showed a significant decrease with age (chi-squared = 6.9, df = 1, P = 0.008), with 10/12 (83%) of young women (aged 17-24 years) having disclosed the abuse, compared with 26/44 (59%) of women aged 25-35 years, 23/45 (51%) aged 35-44 and 16/42 (38%) aged 45 or more. The timing of disclosure after abuse (within compared with more than one year) was not significantly different between the current 10-year age groups (chi-squared = 0.9, df = 4, P = 0.9). Discussion Although Australians have become increasingly aware of the existence and frequency of CSA, its prevalence in the community is not known. This study, the first national survey of Australian women on the prevalence of CSA, demonstrates a high rate of CSA. A rate of 20% for sexual abuse by an adult involving at least genital contact closely parallels the levels in a New Zealand study that used a comparable method of ascertainment. 7 The figure of 35% for any sexual abuse or unwanted sexual experience during childhood found in the present study is comparable to other reports which suggest that more than 50% of women had experienced sexual abuse or an unwanted sexual experience during childhood, but nearer to 10% to 15% had experienced CSA involving genital contact or intercourse. 2,4,7,8,15,16 A consistent finding from studies of CSA is that most of the reported abuse occurs in prepubescent girls. In this study, the mean age at first abuse experience was 10 years. This is within the range of ages of greatest risk, 8-12 years, reported by other studies. 3,7,15,17,18 It is important to note that, although few of the respondents stated that they had experienced sexual abuse before the age of five, it may be that such victims cannot remember the abuse. Australian Institute of Health and Welfare figures for sexual abuse by age group show that the rate of sexual abuse per 1000 children is similar in the two- to five- and six- to 10-years age groups (2.7 and 2.6 per 1000 children). 10 This suggests that abuse in this survey may have been under-reported because abuse that occurred before the age of five was not remembered. Another finding in this study is that only 10% of abuse experiences were ever reported to authorities. This supports claims that official figures may seriously underestimate the extent of the problem. Relatively high rates of abuse and low rates of reporting suggest that general practitioners, teachers, police and health and welfare personnel need to be aware that sexual abuse may be behind a range of interpersonal, behavioural and psychological problems in children. 19 Children will rarely disclose the abuse, but may have other symptoms which should arouse suspicion. This study indicates that young girls aged eight to 10 years are most at risk. Because of the usual closeness of the perpetrator to the victim and the victim's fear of being blamed or not being believed, our community as a whole needs to be mindful of the possibility of childhood sexual abuse. Acknowledgements This paper is based on data gathered for a PhD dissertation. The results presented represent stage 2 of the project. I am especially grateful to all the women who responded to this survey. I would like to thank my supervisors, Dr Gabriele Bammer, Dr Bev Sibthorpe and Dr Aileen Plant, for their advice and assistance. I would also like to thank Professor Paul Mullen for his editorial comments and suggestions and for his ongoing advice in the area of CSA, and Ms Robyn Attewell for her statistical advice. Financial support for this project was provided by the National Campaign Against Drug Abuse and by the National Centre for Epidemiology and Population Health, Australian National University. References Russell D. The incidence and prevalence of intrafamilial and extrafamilial sexual abuse of female children. Child Abuse Negl 1983; 7: 133-146. Wyatt GE. The sexual abuse of Afro-American and White American women in childhood. Child Abuse Negl 1985; 9: 507-519. Baker AW, Duncan SP. Child sexual abuse: a study of prevalence in Great Britain. Child Abuse Negl 1985; 9: 457-467. Bagley C, Ramsay R. Sexual abuse in childhood: psychosocial outcomes and implications for social work practice. J Soc Work Hum Sexuality 1986; 4: 33-46. Finkelhor D, Hotaling G, Lewis IA, Smith C. Sexual abuse in a national survey of adult men and women: prevalence, characteristics and risk factors. Child Abuse Negl 1990; 14: 19-28. Leventhal JM. Epidemiology of child sexual abuse. In: Oates RK, editor. Understanding and managing child sexual abuse. Sydney: Harcourt Brace Jovanovich Group, 1990: 18-42. Anderson JC, Martin JL, Mullen PE, et al. The prevalence of childhood sexual abuse. Experiences in a community sample of women. J Am Acad Child Adolesc Psychiatry 1993; 32: 911-919. Mullen PE, Romans-Clarkson SE, Walton VA, Herbison GP. Impact of sexual and physical abuse on women's mental health. Lancet 1988; I: 841-845. Goldman RJ, Goldman JDG. The prevalence and nature of child sexual abuse in Australia. Aust J Sex Marriage Family 1988; 9: 94-106. Angus G, Wilkinson K, Zabar P. Child abuse and neglect. Australia 1992-1993. In: Australian Institute of Health and Welfare, Child Welfare Series, No. 9; 1995 Canberra: AGPS. Finkelhor D. The international epidemiology of child sexual abuse. Child Abuse Negl 1994; 18: 409-417. Fleming J, Mullen P, Bammer G. A study of potential risk-factors for sexual abuse in children. Child Abuse Negl 1997; 21: 49-58. Stata C. Stata Statistical Software: Release 4.0. Stata Corporation, 1995 (Station C, ed. TX). Australian Bureau of Statistics. 1991 Census of population and housing -- Australia profile. 1993; Canberra: AGPS. Seigel JM, Sorenson SB, Golding JM, et al. The prevalence of childhood sexual assault. The Los Angeles Epidemiologic Catchment Area Project. Am J Epidemiol 1987; 126: 1141-1153. Russell DEH, Schurman RA, Trocki K. The long-term effects of incestuous abuse. A comparison of Afro-American and White American victims. In: Wyatt GE, Powell GJ, editors. Lasting effects of child sexual assault. Newbury Park: Sage Publications, 1988: 119-134. Sedney MA, Brooks B. Factors associated with a history of childhood sexual experience in a nonclinical female population. J Am Acad Child Adolesc Psychiatry 1984; 23: 215-218. Briere J, Runtz M. Symptomatology associated with childhood sexual victimization in a nonclinical adult sample. Child Abuse Negl 1988; 12: 51-59. Mullen PE, Martin JL, Anderson JC, et al. The long-term impact of the physical, emotional and sexual abuse of children. A community study. Child Abuse Negl 1996; 20: 7-21. (Received 15 Jul, accepted 20 Sep 1996) Author's details National Centre for Epidemiology and Population Health, Australian National University, Canberra, ACT. Jillian M Fleming, BSc, PhD. Current position: Coordinator, ACT Alcohol and Drug Service, Canberra, ACT. No reprints will be available. Correspondence: Dr J M Fleming, ACT Community Care, GPO Box 825, Canberra, ACT 2601. E-mail: jmf868 AT nceph.anu.edu.au ©MJA 1997 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Jillian M Fleming

Treatment decision-making at the end of life: a survey of Australian doctors' attitudes towards patients' wishes and euthanasia Charles Waddell, Roger M Clarnette, Michael Smith, Lynn Oldham and Allan Kellehear MJA 1996; 165: 540 For editorial comment, see Hassan Readers may print a single copy for personal use. No further reproduction or distribution of the articles in whole or in part should proceed without the permission of the publisher. For copyright permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Survey participants - Questionnaire - Statistical analysis - Results - Case scenarios 1 and 2 - Case scenario 3 - Case scenario 4 - Responses to request for assisted death - Factors influencing choice of treatment - Factors influencing doctors' responses to patient's request for assisted death - Discussion - Acknowledgements - References - Authors' details - - ©MJA1996 Abstract Objective: To examine factors that influence medical practitioners' treatment decisions for patients with life-threatening or terminal illnesses. Design: Postal survey, conducted between September and November 1995, of a self-administered questionnaire, describing four clinical case scenarios, to a random sample of 2172 Australian doctors in all States and Territories. Respondents were asked to prescribe treatment for the patients described in the scenarios. Patients' characteristics varied in terms of mental competence, illness severity, prognosis, the presence of advance directives, request for assisted death, and sociodemographic factors. The respondents' sociodemographic and medical training characteristics were also obtained. Setting: Random national sample of all active medical practitioners. Participants: Hospital trainees, general practitioners, physicians, palliative care practitioners and surgeons were surveyed. A response rate of 73% was achieved. Main outcome measures: Frequency of prescription of supportive, acute or intensive treatment for patients in the four clinical scenarios based on respondents' sex, religion, medical training and country of medical degree. Results: Three main findings were: (i) doctors did not make consistent decisions, but their decisions varied systematically by sociodemographic and medical training factors; (ii) doctors generally adhered to patient and family wishes when these were known; (iii) doctors did not generally adhere to a patient's request for assisted death. Conclusion: Treatment provided is significantly determined by the individual characteristics of the doctor and not solely by the nature of the medical problem. Participation in the informed-consent process and in the preparation of advance health care directives would enable practitioners to be familiar with patient and family wishes and could reduce variations of treatment related to sociodemographic and medical training factors. Stronger empirical data on the way that treatment decisions are made could provide the basis for an informed euthanasia policy. MJA 1996; 165: 540-544 Introduction Advances in medical technology have allowed the medical profession to maintain life to an extent that is beyond the limits of what many would consider reasonable quality. 1-5 The use of advanced technology, particularly for terminal illnesses, has created a complex array of ethical, moral and legal issues, 6-8 and has been accompanied by opportunities for greater patient participation in treatment decision-making and individual involvement in choosing care. 1,3,4,8 The most contentious aspect of these developments seems to be the promotion of requests for physician-assisted death -- euthanasia. 1,6,9 However, the emphasis on euthanasia has been tempered by a greater focus on palliative-care principles in the management of patients with terminal and life-threatening illnesses. 10-12 A major impediment to the consideration of these issues is the lack of strong empirical data to indicate the way in which treatment decisions are reached. The process that leads to decision-making and action in clinical practice is unclear, and the factors that determine who ultimately makes a treatment decision, what influences treatment choice, and how the treatment is carried out have yet to be established. Although the idea of informed consent implies significant patient participation in decision-making, there is no evidence that such participation actually occurs. Indeed, many patients are incapable of giving informed consent. Doctors and family members usually make decisions in such circumstances, but the path for this process is unknown. Some authors have advocated the use of advance health care directives that can advise doctors of a patient's wishes regarding care should he or she become incompetent. 2 Several studies, surveying both the general public and health professionals, have examined areas relevant to these issues, including reactions of family members to the death of loved ones; 8,10,13 attitudes of doctors to death, dying 1-5 and palliative care; 12,14 doctors' experience with requests for euthanasia; 1,9,15 and factors that influence doctors' choice of treatment. 1-5,7 However, while many of these reports discuss the legal, ethical, medical and philosophical problems confronting health professionals, they do not address the factors that influence the health professionals to act as they do. To examine the factors that influence doctors' decisions on treatment for patients with life-threatening or terminal illnesses, we presented doctors with actual comprehensive clinical scenarios described in a questionnaire and asked them to state what they would do. Methods Survey participants A postal survey was conducted between September and November 1995. An initial mailing of the questionnaire was sent to a national sample of 2016 doctors with a workload of 50 or more services (i.e., items billed to Medicare) per quarter, randomly selected by the Health Benefits Division of the then Commonwealth Department of Human Services and Health. The questionnaire was also posted to all Australian palliative care practitioners registered with the Australian and New Zealand Society of Palliative Medicine ( n = 156). Each practitioner was asked to complete and return the questionnaire anonymously. After two weeks, a reminder card was sent to all in the sample. Of the 2172 posted, 1588 usable questionnaires were returned (3% trainees [interns, residents, registrars]; 41% general practitioners; 10% palliative care practitioners; 46% specialists). The response rate, 73.1%, compared favourably with that of Baume and O'Malley (76.1%). 9 Eighty-seven questionnaires were returned because they were incorrectly addressed. Questionnaire The questionnaire was based upon that used by Molloy and colleagues 2 in Canada. We adapted their case scenarios to the 1995 Australian context, particularly including the issue of physician-assisted death. The questionnaire presented scenarios based on clinical cases (see Box 1). The doctors were asked to choose one of three treatment options in each scenario: 1. Supportive care -- keep warm, dry and pain-free; use only those measures that enhance comfort or minimise pain; start intravenous line only if it improves comfort; perform no x-rays or blood tests and give no antibiotics unless such measures are intended only to improve comfort; 2. Acute care -- may involve transfer to acute-care facility; perform emergency surgery if necessary; do not ventilate (except during and after surgery); carry out all acute-care interventions, except for admission to the intensive care unit or the coronary care unit and performing organ transplantation; 3. Intensive care -- all possible interventions necessary to maintain life. The doctors were also asked how they would respond to a patient's request for assisted death (scenario 4). Three possible responses were listed: 1. Refuse request for assisted death, and explain and provide palliative (supportive) care only; 2. Agree to assist death by providing the means (e.g., by prescribing lethal medication); and 3. Agree to assist death by active intervention (e.g., by administering a fatal dose of narcotic analgesic). To assess the degree to which six independent variables -- legal, ethical, religious and economic factors and patient's and family's wishes -- influenced the choice of treatment, the doctors were asked to complete a five-point Likert-type scale following each scenario. Finally, the questionnaire addressed the sociodemographic characteristics (sex; religious background) and the training of the participating doctors (country of basic medical degree; number of years qualified; level of medical training). The study was approved by the Human Rights Committee, the University of Western Australia. Statistical analysis Our analysis cross-tabulated the aggregated responses to the treatment options of the four clinical scenarios with the sociodemographic and medical training factors to examine whether medical decision-making varied significantly depending on these factors. Statistical significance was tested by chi-squared tests, with exact probability levels being reported. 16 We examined the strength and direction of the relationships among treatment options for the four clinical scenarios and the six independent variables. Somers' d correlation matrix is presented with chi-squared levels of statistical significance of 0.01 and 0.001. 16 Stepwise regression analysis was used to assess the degree of variance explained by the six independent variables in the doctors' responses to the request for physician-assisted death. Results Case scenarios 1 and 2 In the 80-year-old incompetent woman with life-threatening and acute illnesses without the medical directive (Box 2, scenario 1), there were significant differences among doctors' choices by all sociodemographic and medical training factors, except for religion. In the 80-year-old incompetent woman with life-threatening and acute illnesses with a medical directive for acute treatment (Box 2, scenario 2), there were significant differences by religion and medical training factors, but no significant difference between male and female doctors. This woman was twice as likely to receive acute care than was the woman without a medical directive. Case scenario 3 In their treatment choices for the 33-year-old competent woman with terminal and acute illnesses insisting on intensive care, there were significant differences among the doctors by medical training factors but not by sociodemographic factors (see Box 2). Doctors from non-Western countries were more likely to honour the patient's request for intensive care than were Western-trained practitioners; however, most doctors chose acute care for this patient. Older doctors and those not trained in palliative care were also more likely to honour the patient's request for intensive care. Case scenario 4 Nearly all doctors (more than 93%) chose supportive care for the treatment of the 56-year-old competent man with motor neurone disease who requested physician-assisted death. The only significant difference was between doctors trained in Western and non-Western countries, with a greater percentage of the latter choosing more interventionist medical treatment. Responses to request for assisted death Box 2 shows three notable findings on the doctors' responses to the request for assisted death: 1. Most doctors reported that they would provide palliative care only to this patient (explaining the grounds for the decision); 2. The percentage of doctors who were willing to provide only the means to assist death was larger than the percentage who were willing to intervene actively to assist death (frequently referred to as active euthanasia); 3. Female, Catholic, Western-trained and older doctors, as well as palliative care practitioners, were the least willing to engage in any form of euthanasia; agnostic/atheist doctors were the most willing to engage in some form of euthanasia; and doctors trained in non-Western countries were more likely than Western-trained doctors to be willing to provide the means to assist death, but were less likely than Western-trained doctors to actively intervene to assist death. Factors influencing choice of treatment Box 3 presents the Somers' d correlation matrix for scenario treatments with factors influencing treatment choice. For the incompetent 80-year-old woman without the medical directive (scenario 1), legal and ethical factors showed a significant positive correlation with the treatment choice, whereas the patient's and the family's wishes had a significant negative correlation with treatment choice. For the incompetent 80-year-old woman with a medical directive (scenario 2), cost and the patient's and family's wishes were significantly related to the treatment choice, the latter two of these three independent variables being positively associated with treatment choice. For the 33-year-old competent woman insisting on intensive treatment (scenario 3), ethics and the patient's and family's wishes had a significant relation to treatment choice. For the 56-year-old man with motor neurone disease who requested assisted death (scenario 4), none of the factors examined were significantly related to treatment choice. Across the matrix, patient's wishes seemed to have a significant positive relationship with doctors' treatment choice in scenarios 2 and 3, but not in scenario 1 (patient's wishes not known) or in scenario 4 (the patient who requested assisted death). This pattern of correlation suggests face validity for this set of questions. It should be noted that, while some coefficients are statistically significant, they do not suggest strong relationships between the variables. Factors influencing doctors' responses to patient's request for assisted death Stepwise regression analysis of the six independent variables that influenced the doctors' responses to the patient's request for assisted death showed three of these variables to be significant: patient's wishes (F = 67.0; P < 0.001), ethical factors (F = 38.8; P < 0.001) and religious beliefs (F = 27.2; P < 0.001). However, together, these three variables still explained only seven per cent of the variance in doctors' responses to the patient's request for assisted death. Legal (F = 0.028; P = 0.87) and cost factors (F = 2.618; P = 0.11) and family wishes (F = 0.017; P = 0.90) were not significant in predicting doctors' responses to the patient's request for assisted death in this analysis. Discussion A major finding of this study was that doctors did not make consistent decisions on the treatment of severely ill and terminally ill patients at the end of life. The data suggest that there are no uniform criteria to guide doctors in managing such clinical situations. If these decisions are left solely to doctors then the outcome will vary systematically according to medical training and sociodemographic factors. The data also show that doctors generally adhered to patients' wishes, both those expressed contemporaneously and those expressed via advance directives. The doctors also considered the wishes of family members to be important in making their treatment choices. Doctors' capacity to treat patients according to their wishes (and, if necessary, according to the wishes of their families) could be enhanced in two ways: 1. By engaging competent patients (and their families, if required) in comprehensive discussions of treatment options and likely outcomes -- in short, by participating in the informed-consent process. 2. By developing and implementing methods for advanced care planning (advance directives) so that patients can inform doctors of the care they would want if they were to suffer severe and terminal illness and become incompetent. The first practice, informed consent, may be required by law. However, the concept of informed consent presents problems in a multicultural society, not only because of potential communication problems, but also because of cultural differences in such matters as "truth telling" about the seriousness of an illness. 17 The second practice, the use of advance care planning, is accepted in principle (although its manner of implementation is debated) in North America and the United Kingdom. The practice is rarely even discussed in Australia. In multicultural Australia, research that could inform policy on the acceptability and the implementation of these two practices is lacking. Such research would seem to be imperative. With respect to euthanasia, this study showed that few doctors would have complied with the wish of the patient who requested assisted death. Baume and O'Malley 9 speculated that such reluctance was a function of the illegality of the action. Our data do not support this speculation. While patients' wishes, and ethical and religious factors for doctors (as with Baume et al. 18 ), seem to be more efficient predictors than legal factors, even the three former variables explain little of the variance in doctors' response to this request for assisted death (only seven per cent for the three variables together). As an alternative to the speculation of Baume and O'Malley, 9 it may be that, in Australia today, doctors believe that assisting a patient to die is an act that negates what they perceive to be the very essence of their profession. The different ways that doctors perceive this indefinable essential quality (that is, what it means to each of them to be a doctor) may explain the variations in their decision-making. As Lickiss 19 writes: There will always be differences of opinion on profound matters in a free society, but being put to death with one's consent is not a private matter, for it strikes at the foundations of what we are, and affects not only the one put to death but the one who carries it out. Our acts shape us, and the act of putting another person to death must change us. If we are doctors, it strikes at the core of what we should be in society: bringers of life, of hope, of healing, of comfort, sometimes bringers of bad news, companions on the way. But not bringers of death. Hunt, 20 an apparent proponent of some forms of euthanasia, notes that palliative-care practitioners are firmly opposed to physician-assisted death. Other medical practitioners are also opposed. 6,15 Nevertheless, despite the finest symptom management, some terminally ill patients make serious requests for assisted death. 21,22 Perhaps, if some form of euthanasia is to be available to these patients, medical practitioners may not be the most appropriate group to carry out the request. Certainly, it would be prudent to investigate doctors' perceptions of what it means to them to be a doctor in Australia today. Furthermore, as stated at the beginning of the paper, a major impediment to informed consideration of the issue of euthanasia in Australia is the lack of strong empirical data. While we have added to and improved the data by this study, in which we questioned a national sample of doctors about their end-of-life treatment decisions in the specific clinical scenarios described, we did not attempt the difficult task of obtaining empirical data related to clinical decision-making at the bedside. Data drawn from strong research into this decision-making process could provide important information before policy on euthanasia is drafted and implemented. Acknowledgements This research was funded by the Commonwealth Department of Health and Family Services, Canberra. References Stevens CA, Hassan R. Management of death, dying and euthanasia: attitudes and practices of medical practitioners in South Australia. J Med Ethics 1994; 20: 41-46. Molloy W, Guyatt GH, Alemayehu E, et al. Factors affecting physicians' decisions on caring for an incompetent elderly patient: an international study. Can Med Assoc J 1991; 145: 947-952. Kelner MJ, Bourgealt IL. Patient control over dying: responses of health care professionals. Soc Sci Med 1993; 36: 757-765. Solomon MZ, O'Donnell L, Jennings B, et al. Decisions near the end of life: Professional views on life- sustaining treatments. Am J Public Health ; 1993; 83: 14-22. Christakis NA. Physician characteristics associated with decisions to withdraw life support. Am J Public Health 1995; 85: 367-372. Komesaroff PA, Lickiss JN, Parker M, Ashby MA. The euthanasia controversy: decision-making in extreme cases. Med J Aust 1995; 162: 594-597. Kaufman SR. Decision making, responsibility, and advocacy in geriatric medicine: physician dilemmas with elderly in the community. Gerontologist 1995; 35: 481-488. Ashby M, Wakefield M. Attitudes to some aspects of death and dying, living wills and substituted health care decision-making in South Australia: public opinion survey for a parliamentary select committee. Palliat Med 1993; 7: 273-282. Baume P, O'Malley E. Euthanasia: attitudes and practices of medical practitioners. Med J Aust 1994; 161: 137-145. Maddocks I. Good palliative care orders. Palliat Med 1993; 7: 35-37. Baume P. Living and dying: a paradox of medical progress. Med J Aust 1993; 59: 792-794. Wakefield MA, Beilby J, Ashby MA. General practitioners and palliative care. Palliat Med 1993; 7: 117-126. Seale C, Addington-Hall J. Euthanasia: the role of good care. Soc Sci Med 1995; 40: 581-587. Allbrook D. Palliative care in the 1990s? Med J Aust 1991; 155: 286-287. Anderson JG, Caddell DP. Attitudes of medical professionals toward euthanasia. Soc Sci Med 1993; 37: 105-114. Siegel S. Nonparametric statistics for the behavioural scientist . London: McGraw-Hill 1956. Waddell C, McNamara B. The stereotypical fallacy: a comparison of Chinese- and Anglo-Australians' thoughts about death-related matters. Presented at the Annual Australian Sociology Association Meeting, Newcastle, NSW. December 1995. Baume P, O'Malley E, Bauman A. Professed religious affiliation and the practice of euthanasia. J Med Ethics 1995; 21: 49-54. Lickiss, N. Chapter in: Chapman S, Leeder S, editors The last right? Australians take sides on the right to die. Melbourne: Mandarin, 1995: 98. Hunt RW. The hospice movement matures. Med J Aust 1996; 164: 452-453. Stephany TM. Assisted suicide: how hospice fails. Am J Hospice Palliat Care 1994; 11: 4-5. Peteet JR. Treating patients who request suicide: a closer look at the physician's role. Arch Fam Med 1994; 3: 723-727. (Received 15 May, accepted 29 Jul 1996) Authors' details The University of Western Australia, Nedlands, WA. Charles Waddell, PhD, Senior Lecturer in Anthropology. Department of Geriatric Medicine, Osborne Park Hospital, Perth, WA. Roger M Clarnette, MB BS, FRACP, Consultant Physician. Silver Chain Hospice Care Services, Perth, WA. Michael Smith, MB BS, MRACMA, Director of Clinical Services. The Cancer Foundation Cottage Hospice, Perth, WA. Lynn Oldham , BN(Hons), Clinical Nurse Specialist. Turning Point Alcohol and Drug Centre, Fitzroy, VIC. Allan Kellehear, PhD, Professor, and Head of Research Development. No reprints will be available. Correspondence: Dr Charles Waddell, Department of Anthropology, The University of Western Australia, Nedlands, WA 6907. E-mail: cwaddell AT uniwa.uwa.edu.au - - To top of article - ©MJA 1996 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Charles Waddell · Rodger M Clarnette · Michael Smith · Lynn Oldham · Allan Kellehear

Patterns of alternative medicine use by cancer patients Stephen D Begbie, Zoltan L Kerestes and David R Bell MJA 1996; 165: 540 For editorial comment, see Lowenthal Readers may print a single copy for personal use. No further reproduction or distribution of the articles in whole or in part should proceed without the permission of the publisher. For copyright permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Experiences of conventional treatment - Alternative treatment - Patient characteristics and alternative therapy use - Discussion - Acknowledgements - References - Authors' details - - ©MJA1996 Abstract Objective: To assess the patterns of alternative medicine use in patients of a public hospital oncology unit, and to compare patients' experience of alternative with conventional medicine. Design and setting: Self-administered questionnaire survey of cancer patients attending specialist consulting rooms at the Royal North Shore Hospital and the Oncology Outpatient Clinic at Port Macquarie Base Hospital during August 1995. Participants: 507 patients attended the clinics; 335 (66%) returned questionnaires, of which 319 (62%) were sufficiently complete for analysis. Main outcome measures: Expectations of and satisfaction with both conventional and alternative treatment, use of alternative treatment, and patient characteristics associated with this use. Results: Expectations of and satisfaction with both conventional and alternative treatment were very high. Alternative treatments (most commonly dietary and psychological methods) were used by 21.9% of patients. Median annual cost of alternative therapy was $530, with most patients reporting "value for money". Younger age and being married were positively associated, and satisfaction with conventional treatment was negatively associated, with alternative medicine use; 40% of patients did not discuss alternative medicine with their physician. Conclusions: A significant proportion of cancer patients use one or more forms of alternative therapy. The use of alternative therapy may reflect on deficiencies in the current standard of care. MJA 1996; 165: 545-548 Introduction Rapid developments in the conventional management of cancer have been accompanied by an increased consumer-driven move toward choice and individual control. While alternative (or complementary) medicine has always existed, its availability and variety are growing and its use increasing. 1 Cancer patients use alternative therapies despite arguments such as lack of scientific validity, proven ineffectiveness of some treatments and reliance on the placebo effect. It may be helpful for Australian doctors to know the range of alternative therapies used by cancer patients, and to have an understanding of the reasons why they use such therapies, as this may cast some light on deficiencies in the current standard of conventional care. We aimed to investigate the range of alternative therapies used by cancer patients attending outpatient clinics conducted by a teaching hospital clinical oncology unit, and to assess the level of satisfaction with these therapies and with conventional therapy. Methods Our subjects were all patients who attended the specialist consulting rooms of three medical oncologists at Royal North Shore Hospital (RNSH) in Sydney, and the Oncology Outpatient Clinic at Port Macquarie Base Hospital (PMBH), New South Wales, during August 1995. Reception staff offered each patient a self-administered questionnaire, with a covering letter from the chief investigator encouraging participation, and assuring confidentiality. Response to the questionnaire was voluntary, and patients were not asked to give explanations for not responding. The questionnaire sought demographic data, and the following information about their conventional treatment: understanding of diagnosis and treatment, expectations before treatment, impressions at the conclusion of treatment, and overall satisfaction. All questions were multiple choice, with the exception of diagnosis. Those who had used alternative medicine were asked (in multiple-choice questions, but with space for comments) to outline their reasons for doing so, as well as the treatments chosen. The questionnaire did not seek details of the chosen therapies. The same questions that were used to assess their conventional medicine experience were used to assess their alternative medicine experiences. In addition, they were asked about the reaction of family and friends to their use of alternative therapy, whether they had discussed alternative treatment with their medical oncologist, to estimate the financial cost, and whether they felt they had received value for money. Data were analysed using the Statistical Package for the Social Sciences 2 to determine associations between patient characteristics and alternative medicine use; significance was measured by the odds ratio. Logistic regression analysis was used to analyse all variables which may affect use of alternative therapy. Approval for this study was received from the Royal North Shore Hospital Ethics Committee, and from Port Macquarie Base Hospital. Results Five hundred and seven patients attended, of whom 335 (66%) responded (271 from RNSH, 64 from PMBH). Sixteen questionnaires were excluded from assessment (the alternative medicine question was unanswered in 12, no demographic details were given in 3, and one was returned blank), leaving 319 (62%) to be assessed. Demographic details for the 319 patients are shown in Box 1. It is noteworthy that in our study women, married people, and those with high levels of education and private health insurance predominate. Only 22.9% of the 319 patients were in paid employment, and median household income was in the $20 000-$40 000 range. A wide variety of diagnoses were represented; breast cancer was the single most common diagnosis. Experiences of conventional treatment Most respondents had received chemotherapy, and many had undergone other kinds of cancer therapy (Box 1). When asked about their expectations at the beginning of treatment, 85.6% believed that it would cure them or prolong their lives. By contrast, at the end of conventional treatment 63.0% felt that they had been cured or that their life had been prolonged, while 8.2% felt that their treatment had been of no benefit, or had made them worse. Most respondents (75.3%) were either satisfied or very satisfied with their experience of conventional therapy, while only 3.1% were either unsatisfied or very unsatisfied. Alternative treatment Seventy patients of the 319 assessed (21.9%) indicated that they were using alternative therapy. The most frequently given reasons were a preference for natural therapy, and seeing the alternative therapy as another source of hope (Box 2). Box 3 shows the alternative therapies chosen; dietary and psychological methods were most prevalent, followed by herbalism. Seventy-five per cent of patients tried more than one therapy (median, 3; range, 1-8). Most of the patients had learnt of alternative therapies through friend or family recommendation (37; 52.9%), and personal research (32; 45.7%), while doctor's recommendation (11; 15.7%) and media reports (6; 8.6%) were less common (some patients cited more than one source). In addition, family and friends were overwhelmingly supportive, with those of 64 patients (91.4%) being either encouraging or tolerant of the use of alternative therapies. At the beginning of alternative treatment 51 patients (72.9%) expected it would cure them or prolong their lives, while at the completion 34 (48.6%) felt that they had been cured, or that their lives had been prolonged. Only seven (10%) had the impression that alternative treatment was of no benefit, or had made them worse. Overall, 49 patients (70%) were satisfied or very satisfied with alternative treatment, and only one (1.4%) was unsatisfied. Forty-five patients gave an estimate of the annual cost of their alternative therapy; the median annual cost was $530 (range, 0-$20 000). Of the 70 patients who had alternative therapy, 45 (64.3%) felt they were getting value for money, five (7.1%) did not, and the remainder did not answer this question. Importantly, 37 (52.9%) felt that they could discuss their alternative treatment with their physician, while 28 (40%) felt they could not. Patient characteristics and alternative therapy use Being young and being married were significantly associated with use of alternative medicine, with marital status significant at P = 0.02. Logistic regression analysis showed that age and satisfaction with conventional therapy are the key predictors for a decision to use alternative therapy. Overall, younger patients used more alternative therapy (odds ratio, 1.67; P < 0.0001; 95% CI, 1.32-2.13), and those who were very satisfied with their conventional treatment used less alternative therapy (odds ratio, 0.55; P < 0.0001; 95% CI, 0.38-0.79). Sex, level of education, employment status, income, private health insurance, diagnosis, expectations at beginning of treatment or impressions at the end of treatment were not significantly associated with use of alternative therapy. Discussion Any discussion of alternative medicine is complicated by arguments about terminology. The most commonly used terms in the literature are "alternative", "complementary" or "unproven". Some have suggested that the term "alternative" is spurious, because it suggests equally valid options, 3 but we have chosen to use it because it is in common use in describing treatments outside conventional medicine. "Complementary" may seem an appropriate term for a study of patients attending a hospital, but it suggests therapies that are valuable when combined with conventional medicine. "Unproven" is the American Cancer Society's preferred term and relates to methods that are "on the basis of careful review by scientists and/or clinicians, not deemed proven, nor recommended for current use". 4 It has also been suggested that "There are no unproven treatments for universally curable diseases" 5 -- the very fact that this issue is so controversial in cancer medicine suggests that conventional treatment has a long way to go in optimising management of malignant disease. Previous studies have shown that between 9% and 54% of adult cancer patients use some form of alternative medicine, 6-10 while a recent Australian study reported a 46% rate of alternative therapy use in a paediatric oncology population. 11 The rate of alternative medicine use in our study (21.9%) is within this range. It may not be an accurate reflection of alternative therapy use in cancer patients as our patients' response to the questionnaire was voluntary, creating a potential selection bias. Nevertheless it does indicate that a significant proportion of cancer patients use some form of alternative therapy, and gives some idea of the current range of therapies. Several features of our study population should be considered when relating our results to other populations. Royal North Shore Hospital services the northern Sydney area, where the population is characterised by being relatively wealthy, and having high levels of education and private health insurance. Port Macquarie Base Hospital serves a community with a large retired population and relative wealth (by rural standards). The high prevalence of breast cancer managed by this unit explains the predominance of women in the group studied. There was a high level of optimism at the outset of both conventional treatment and alternative therapy (85.6% v. 63.0% belief in cure/life-prolongation), which fell modestly by completion of treatment (72.9% v. 48.6%). As most patients were receiving palliative chemotherapy, it seems that many patients had an unrealistic expectation about the goals of treatment. This reinforces the need for clear communication with patients. However, most patients were highly satisfied with both conventional and alternative treatments (75.3% v. 70.0%), and dissatisfaction was almost non-existent (3.1% v. 1.4%). This high level of satisfaction, often in the absence of objective benefit, has been described in studies of conventional 12 and alternative 6,11 medicine, and may be related to a hope engendered by the intervention of a clinician. 13,14 As in other studies which report that patients will frequently try multiple alternative therapies, 6,11 we found that over 75% of patients used two or more therapies. Alternative therapies available in Australia appear to be a mixture of the British and United States experience. Psychological methods such as relaxation, imagery and healing, which are prevalent in the United Kingdom, 6 and interventional methods, such as diet and megavitamins, more common in the US, 7 are used with similar frequency. The predominance of friend and family recommendation (52.9%) as the source of information on alternative medicine may partially explain the significantly increased use by married patients. The contribution of recommendation by doctors is comparatively low, but it must be remembered that these patients were attending an oncology service. Of course, some cancer patients may not seek conventional care, and consultations with alternative practitioners, or with medical practitioners who combine conventional and alternative therapies, are becoming more common. 15,16 In the US there are currently more referrals to alternative practitioners than to primary care physicians. 17 Many studies report the significant financial costs of alternative medicine. 5,9,18-20 There is a wide variation in the cost of various therapies, with psychological methods usually far less expensive than interventions such as metabolic therapy, Laetrile and high-dose vitamin C. In one US study, the median annual outlay was US$262, and the mean was US$3492, suggesting enormous expense in some cases. 7 Our findings are similar, with expenditure ranging from nothing to $20 000 per year. However, nearly all of those using alternative medicine felt they were getting value for money. Previous studies have reported that users of alternative therapy tend to be young, female, of higher social class and more highly educated, while income, increased time since cancer diagnosis, increased number of people in a household, and tumour site may be associated with alternative therapy use. 6,7,9 We found that being young and being married were significantly associated with increased use, and that those who were very satisfied with conventional therapy used less alternative therapy. The finding that being married is associated with increased use of alternative therapy may be related to having increased numbers in a household, 9 and perhaps greater access to ideas and support for trying new things. Many patients in our study did not discuss their use of alternative therapy with their physicians, possibly because they were afraid of getting a negative response. This may reflect a need to improve doctor-patient communication. If a proportion of patients are going to use alternative therapies, it is important that their doctors are informed: firstly, so that possible interactions and complications can be avoided, and, secondly, to enable doctors to provide informed opinion on the alternative choices available. Acknowledgements We thank Professor John A Levi and Dr Helen R Wheeler for contributing their patients to the study. References MacLennan AH, Wilson DH, Taylor AW. Prevalence and cost of alternative medicine in Australia. Lancet 1996; 347: 569-573. SPSS: Statistical package for the social sciences [computer program], version 5. Chicago, Ill: SPSS inc, 1990. McGinnis LS. Alternative therapies, 1990. An overview. Cancer 1991; 67: 1788-1792. Pamphlet number 3028-REV. Atlanta, Ga.: American Cancer Society, 1990. Cassileth BR. The social implications of questionable cancer therapies. CA Cancer J Clin 1989; 39: 311-316. Downer SM, Cody MM, McCluskey P, et al. Pursuit and practice of complementary therapies by cancer patients receiving conventional treatment. BMJ 1994; 309: 86-89. Cassileth BR, Lusk EJ, Strouse TB, Bodenheimer BA. Contemporary unorthodox treatments in cancer medicine. A study of patients, treatments and practitioners. Ann Intern Med 1984; 101: 105-112. Harris L and associates. Health information and the use of questionable treatments: a study of the American Public, 1987. Washington DC: Department of Health and Human Services, 1987. Lerner IJ, Kennedy BJ. The prevalence of questionable methods of cancer treatments in the United States. CA Cancer J Clin 1992; 42: 181-191. Miller MJ, Boyer MJ, Dunn SM, et al. Why do Australian cancer patients use unproven therapies? Proc Clin Oncol Soc Aust 1995; 22: 78. Sawyer MG, Gannom AF, Toogood IR, et al. The use of alternative therapies by children with cancer. Med J Aust 1994; 160: 320-322. Coates A, Gebski V, Bishop JF, et al. Improving the quality of life during chemotherapy for advanced breast cancer. N Engl J Med 1987; 317: 1490-1495. Stoll BA. Can unorthodox cancer therapy improve quality of life? Ann Oncol 1993; 4: 121-123. Kodish E, Post SG. Oncology and hope. J Clin Oncol 1995; 13: 1817-1822. Borkan J, Neher JO, Anson O, Smoker B. Referrals for Alternative therapies. J Fam Prac 1994; 39: 545-550. Paterson C, Peacock W. Complementary practitioners as part of the primary health care team: evaluation of one model. Br J Gen Pract 1995; 45: 255-258. Burke C, Sikora K. Complementary and conventional cancer care: the integration of two cultures. Clin Oncol 1993; 5: 220-227. Guzley GJ. Alternative cancer treatments: impact of unorthodox therapy on the patient with cancer. South Med J 1992; 85: 519-523. Cassileth BR, Lusk EJ, Guerry D, et al. Survival and quality of life among patients receiving unproven as compared with conventional cancer therapy. N Eng J Med 1991; 324: 1180-1185. Ernst E. Complementary medicine: common misconceptions. J R Soc Med 1995; 88: 244-247. (Received 24 Jan, accepted 5 Aug 1996) Authors' details Department of Clinical Oncology, Royal North Shore Hospital, Sydney, NSW. Stephen D Begbie, MB BS, Oncology Registrar; Zoltan L Kerestes, PhD, Computer Scientist; David R Bell, MB BS, FRACP, Medical Oncologist. Reprints: Dr D R Bell, Department of Medical Oncology, Royal North Shore Hospital, St Leonards, NSW 2065. - To top of article - ©MJA 1996 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Stephen D Begbie · Zoltan L Kerestes · David R Bell

Routine pulmonary function tests in young adolescents with asthma in general practice Peter H Hewson, Elizabeth A Tippett, Danny M Jones, Justin P Madden and Peter Higgs For editorial comment, see Sawyer and Bowes Readers may print a single copy for personal use. No further reproduction or distribution of the articles in whole or in part should proceed without the permission of the publisher. For copyright permission, contact the Australasian Medical Publishing Company Journalists are welcome to write news stories based on what they read here, but should acknowledge their source as "an article published on the Internet by The Medical Journal of Australia <http://www.mja.com.au/>". Abstract - Introduction - Methods - Results - Discussion - Acknowledgements - References - Authors' details - - ©MJA1996 Abstract Objective: To assess the value of performing routine pulmonary function tests by flow-loop spirometry in young adolescents with asthma. Design: A prospective clinical study comparing clinical assessment and patients' self- reporting of asthma severity with the results of pulmonary function tests. Setting: General practice in a small rural community of about 30 000 people. Patients: Young adolescents with asthma, aged 10-15 years, were enrolled in the study over a two-year period from July 1993 to June 1995 when they presented for either elective, interval assessments or with an acute exacerbation of asthma. Main outcome measures: Discrepancy between (i) the doctor's and the patient's perception of asthma control (six scale measures) and the consequent management plans, and (ii) the results of pulmonary function tests that indicated less than adequate airway function (i.e., forced expiratory volume in one second as a percentage of predicted vital capacity for height and sex [FEV 1 %] less than 65% or average flow rate over the middle 50% of forced vital capacity as a percentage of predicted normal value [FEF 25%-75% ] less than 65%). Results: Twenty-seven adolescents with asthma were assessed on a total of 37 occasions. The results of pulmonary function tests did not correlate with asthma symptoms and treatment in 11 of the 37 assessments (30%; 95% confidence interval [CI], 16%-47%). The 11 assessments were performed on eight patients. Conclusions: This small community-based study of adolescents with asthma supports the view that pulmonary function testing by flow-loop spirometry should be part of the routine assessment of acute and chronic asthmatics. Further study in a larger community is needed to clarify the frequency of over- and underestimation of asthma severity in this difficult age group. MJA 1996; 165: 469-472 Introduction Older children and adolescents often have difficulty assessing the severity of their asthma, 1 and consequently pulmonary function tests have been recommended for those with frequent or chronic asthma who are able to perform spirometry adequately. 2-4 Pulmonary function testing by flow-loop spirometry allows measurement of forced expiratory volume in one second as a percentage of the predicted vital capacity for height and sex (FEV 1 %), and forced mid expiratory flow (FEF 25%-75% : the average flow rate over the middle 50% of forced vital capacity). While peak flow monitoring and FEV 1 % have been used for decades as a measure of pulmonary function, forced mid expiratory flow is not as well known a measure, but is more sensitive than FEV 1 in detecting small airways obstruction. 2 Pulmonary function tests have been shown to be useful in adults, but there are few studies of their useful ness in children and young adolescents with asthma. One study found that 17% of apparently well children with asthma had a low forced expiratory volume in one second / vital capacity ratio (FEV 1 /FVC) and 54% had low forced mid expiratory flow (FEF 25%-75% ), suggesting that, without these tests, both patients and doctors were unable to detect mild degrees of broncho constriction, especially of the smaller airways. 5 To date, no study has described the use of pulmonary function tests as part of routine community medical practice in young adolescents. In fact, in some centres, spirometry tests are not yet done routinely in chronic asthmatics in this age group. We performed pulmon ary function tests in adolescents with asthma in an Australian country setting, comparing patients' and doctors' clinical assessment of asthma severity with the results of routinely performed pulmonary function tests. Methods This two-year study took place in Colac, Victoria (population, 14 000; regional population, 30 000) between July 1993 and June 1995. All young adolescents with asthma (recurrent wheeze responsive to bronchodilators) between the ages of 10 and 15 years pre senting to their general practitioner Monday to Friday either for an elective asthma management review, or because of an acute exacerbation of their asthma, were assessed by the general practitioner and included in the study. No adolescents were excluded from the study or refused to participate. Appointments for elective management reviews (interval assessments) had been made weeks in advance. An acute exacerbation of asthma was defined as an appreciably more severe wheeze and cough than usual (as assessed by the general practitioner). The severity of symptoms and the perception of asthma control were assessed by the general practitioner, giving day and night symptom scores (0-5), and a wheeze description, based on questioning of the patient. The doctor and the patient then separately graded asthma control as excellent, very good, fair, poor, or very poor. (The scoring system is given in the footnote to the Table). Forced expir atory volume in one second (FEV 1 ) and forced mid expiratory flow (FEF 25%-75% ) were measured -- on the same day if it was a daytime presentation (usually immediately after the clinical assessment) or the morning after if it was an evening presentation. An Alpha Vitalograph spirometer (Fisher & Paykel, Melbourne, Vic.) was used and the tests were conducted by the senior physiotherapist at Colac Hospital (E A T), who had attended the spirometry technician's course run by the Department of Respiratory Medicine, Alfred Hospital, Melbourne. The tests were repeated if the assessment was judged to be inadequate by the physiotherapist. The effect of bronchodilators on pulmonary function tests was determined in all patients, with recordings being taken 20 minutes (in one patient 25 minutes) after bronchodilator therapy. The pulmonary function tests were done without knowledge of the clinical status of the patient and the results were made available to the treating doctor if requested. The patients' previous home peak expiratory flow measurements were also recorded, as was peak flow measured with the spirometer. The results of the pulmonary function tests were considered not to correlate with asthma symptoms and treatment, and to be likely to lead to a change in asthma management, if: During an interval assessment: The patient complained of no, few or only moderate symptoms, the doctor felt asthma control was excellent, very good or reasonable, respectively, and did not change treatment, but FEV 1 % (normal, > >80%) or FEF 25%-75% (normal, > >65%) was less than 65%. The patient and the doctor thought control was poor, the dose of maintenance asthma therapy was increased, but pulmonary function tests revealed no evidence of bronchospasm. During assessment of an acute exacerbation: The patient and the doctor felt current asthma control was excellent or very good, no increase in dose of inhaled steroids was suggested and no oral corticosteroids were prescribed, but FEV 1 % or FEF 25%-75% was less than 65%. Results Twenty-seven adolescents with asthma (male : female ratio, 2 : 1) were assessed on a total of 37 occasions. On 22 occasions they were elective interval assessments and 15 were for an acute asthma exacerbation. Nineteen patients (70%) were monitoring peak flow at home. Twenty-nine (78%) of the pulmonary function tests were within two hours, four (11%) between two and four hours and four (11%) between four and 14 hours after the clinical assessment. Satisfactory spirometry measurements were achieved in all patients without difficulty (fewer than four repeats). Of the 22 interval assessments, 16 (73%) were in patients taking inhaled corticosteroids (in 11 of these the patients were taking more than 700 µg inhaled corticosteroids per day, and in five FEF 25%-75% values were less than 65%). In two (9%) interval assessments peak expiratory flows were less than 300 L/min (in only one of the assessments with FEF 25%-75% less than 65% were peak flows less than 300 L/min). Of the 15 acute exacerbation assessments, eight (53%) were in patients taking inhaled corticosteroids (in three of these the patients were taking more than 700 µg inhaled corticosteroids per day). In five (45%) acute exacerbation assessments peak expiratory flows were less than 300 L/min (four were unavailable). Details of the patients whose pulmonary function tests did not correlate with asthma symptoms and treatment are given in the Table. Overall, pulmonary function tests not correlating with clinical and patient assessment of asthma severity were found in 11 of 37 assessments (30%; 95% confidence interval [CI], 16%-47%). If only those tests performed within four hours of the clinical assessment are included, pulmonary function tests in 10 of 33 assessments (30%; 95% CI, 15%-46%) did not correlate with asthma severity. Pulmonary function tests in six of the 22 interval assessments (27%; 95% CI, 11%-50%) showed FEV 1 % or FEF 25%-75% to be less than 65% when management had not been changed after clinical assessment (Cases 1-6). During acute exacerbations, four of 15 assessments (27%; 95% CI, 8%-55%) showed FEV 1 % or FEF 25%-75% values to be less than 65% when no change in treatment had been made on clinical grounds (Cases 8-11). Tests in one patient (Case 7) showed normal pulmonary function after clinical assessment had suggested poor asthma control. Her pulmonary function tests were carried out within two hours of the clinical evaluation; her inhaled cortico steroid dose had been doubled. Discussion This community-based study of all young adolescent asthmatics presenting to their general practitioners in a country town found that in 30% of assessment opportunities the results of pulmonary function tests were likely to change management. This proportion was maintained even if slightly delayed pulmonary function tests (4-14 hours) were excluded. This result is comparable with previously published findings that 54% of apparently well asthmatics had lower than expected FEF 25%-75% values at follow-up, despite being asymptomatic. 5 At interval assessments in which management had not been changed and the results of pulmonary function tests were low, three of five adolescents (Table: assessments 1, 3-6) reported frequent wheeze. The other two thought their asthma was well controlled; however, their FEF 25%-75% values were 62% and 42%, respectively. In these patients peak flows, measured at home and by spirometry, were all above 300 L/min and this may have accounted for ALIGN=TOP the reluctance to change therapy. However, it has been shown previously that peak flow results can be misleading, and widely varying optimal values can be expected. 3 A low expectation of what can be achieved in frequently symptomatic patients may contribute to a less aggressive approach in adolescents with asthma. The rather frequent use of inhaled corticosteroids in relatively high doses in this small sample of asthmatics suggests that a more objective measure of asthma status should be used. Potential overuse of inhaled corticosteroids in these growing young people may not always safeguard those at risk of more severe asthma. Six of 11 patients (55%) taking more than 700 µg inhaled corticosteroids had FEF 25%-75% values less than 60%, suggesting that in these patients an even higher dose of inhaled corticosteroid may be required. More specific alterations to long term inhaled steroid use would be possible if pulmonary function tests were performed regularly. During assessments for acute exacerbation the rate of pulmonary function tests not correlating with symptoms was still high (27%) and the FEF 25%-75% was worryingly low in three patients in whom management was not altered (Table: assessments 8, 9, 10, and 11). These three adolescents all had frequent wheeze, but presumably were not distressed, with peak flows (measured at home and by spirometry) above 320 L/min. Pulmonary function tests gave an indication of small airways disease which they were not aware of or was not revealed by their peak flow measurements. Our study involved a small number of patients and the confidence intervals calculated suggest a larger study is necessary. Nevertheless, data on mortality in asthma indicate that underestimation of asthma severity can be extremely important. Robertson et al. found that about 35% of possibly preventable asthma deaths may have been related to medical practitioner underestimation of asthma severity. 6 The full implications of FEF 25%-75% values in the 55%-65% range is not yet certain. A long term follow-up of asymptomatic patients with values in this range has not yet been done. Most of our patients with low FEF 25%-75% values not correlating with symptoms had values below 55% (Table: 7 of 10 assessments). Thus, even if the implications of an FEF 25%-75% value between 55% and 65% is disputed, the frequency of the lower results suggests more aggressive treatment is required. This relatively small study of asthmatic adolescents in a small country town strongly supports the view that pulmonary function tests need to be part of the routine assessment of acute and chronic asthmatics. Acknowledgements We thank Professor P D Phelan, Department of Paediatrics, University of Melbourne, for his provocation, encouragement and support; and Mr Ross Gollan, Senior Lecturer, Department Mathematics and Statistics, Deakin University. References Sly PD, Landau LI, Weymouth R. Home recording of peak expiratory flow rates and perception of asthma. Am J Dis Child 1985; 139: 479-482. Landau LI. The value of lung function in guiding drug therapy in childhood asthma. Eur Respir Rev 1994; 4: 10-14. Phelan PD, Olinsky A, Robertson CF. Respiratory illness in children, 4th edition. Cambridge: Blackwell Scientific Publications, 1994; 152-156. Milner AD. Childhood asthma: diagnosis, treatment and management. London: Martin Dunitz, 1987; 18-38. Bye MR, Kerstein D, Barsh E. The importance of spirometry in the assessment of childhood asthma. Am J Dis Child 1992; 146: 977-981. Robertson CF, Rubinfeld AR, Bowes G. Deaths from asthma in Victoria: a 12-month survey. Med J Aust 1990; 152: 511-517.(Received 19 Sep 1995, accepted 4 Jul 1996) Authors' details 106 McKillop Street, Geelong, VIC 3220. Peter H Hewson, MD, FRACP, Consultant Paediatrician. Colac Hospital, Corangamite Street, Colac, VIC. Elizabeth A Tippett, DipPhys, Senior Physiotherapist. 2 Connor Street, Colac, VIC. Danny M Jones, MB BS, DA, DipRACOG, General Practitioner; Justin P Madden, MB BS, DA, DRCOG, General Practitioner; Peter Higgs, MB BS, General Practitioner. No reprints will be available. Correspondence: Dr P H Hewson. - - To top of article - ©MJA 1996 <URL: http://www.mja.com.au/> © 1996 Medical Journal of Australia.

Peter H Hewson · Elizabeth A Tippett · Danny M Jones · Justin P Madden · Peter Higgs

Major depression and refusal of life-sustaining medical treatment in the elderly Stuart C Hooper, Kevin J Vaughan, Christopher C Tennant and Janette M Perz MJA 1996; 165: 416-419 Abstract - Introduction - Methods - Patients and assessment - Follow-up - Statistical analyses - Results - Patients - Intensity of depression - Desire for life-sustaining treatment - Discussion - Acknowledgements - References - Authors' details Abstract Objective: To examine the effect of improvement or recovery from major depression in elderly patients on their desire for life-sustaining treatments. Design: Prospective case survey. Setting: Psychogeriatric Service of Hornsby Ku-ring-gai Hospital & Community Health Services and Ryde Hospital & Community Health Services (a community-based service serving an urban population with over 29 000 elderly people). Subjects: All patients referred with major depression (diagnosed by DSM-IV criteria) and no significant cognitive impairment between October 1994 and January 1995. Outcome measures: Number of life-sustaining treatments desired before and after treatment of depression in two hypothetical acute life-threatening illnesses (one with a good and the other with an uncertain prognosis), and intensity of depression on the Geriatric Depression Scale (GDS). Results: 22 subjects completed both stages of the study. Initial depression was severe in five, moderate in 16 and mild in one. GDS scores decreased in 18 subjects after treatment. Mean number of life-sustaining treatments desired by these patients increased significantly from 4.0 to 6.1 (out of seven possible treatments) in the "good prognosis" illness and from 6.4 to to 9.6 (out of 14) overall. The increase in the "uncertain prognosis" illness (2.3 to 3.4) was not significant. Conclusions: Moderate or severe major depression in the elderly is associated with a high degree of refusal of life-sustaining treatments. Treatment of the depression leads to increased acceptance of these treatments, particularly if prognosis is good. MJA 1996; 165: 416-419 Introduction Decisions about withdrawing or withholding life-sustaining medical treatments have become problematic in recent decades. Dramatic advances in medical technology enable many severely ill patients to remain alive, yet the decision to prolong life is tempered by the finite nature of resources, economic rationalism and the patient's quality of life. In the United States, it is estimated that decisions to limit medical treatment are made for about 70% of patients who die in hospital.1 In many cases, this is due to patient refusal of further medical treatment and is part of the strong shift towards respecting patients' autonomy and right to self-determination. In all Australian States, there is a common-law right for competent patients to refuse medical treatment, including life-sustaining treatment. In Victoria, South Australia and the Northern Territory, this right has received statutory recognition. In these States, legislation also permits competent individuals over 18 years to make advance directives ("living wills") specifying that in the event of a terminal illness the individual does not wish to be subjected to extraordinary life-prolonging measures.2 However, the potential influence of depressive illness on patients' refusal of life-sustaining treatment is often neglected. In the elderly (who are disproportionately represented among those who have life-sustaining treatment withheld or withdrawn), depression is often not recognised by primary care physicians.3-7 Misdiagnosis is especially likely in the elderly if symptoms are atypical (e.g., cognitive deficits [pseudo dementia], somatisation or anxiety). Further, with depression impairments in decision-making may be under-recognised, as the cognitive aspects of competence (which are emphasised by doctors and courts) may remain intact, while more subtle abilities (such as the ability to assign realistic values or meanings to the risks and benefits of prospective treatments)8,9 may be impaired. Depressed patients may undervalue potential positive outcomes and predict negative outcomes.9 These "affective" aspects of clinical competence are generally not considered as important as the "cognitive" aspects and can be more difficult to detect.10 The negative outlook disappears after recovery from depression, suggesting that it is specific to the illness phase and not a trait of depression-prone individuals.11,12 Case reports have highlighted patients who have initially refused, but later accepted, life-sustaining treatment after recovery from depression.9,15-18 Longitudinal studies of male Veterans Administration patients in the United States found that desire for life-sustaining treatment was not increased by recovery from major depression of mild to moderate severity,13,14 but was significantly increased if the major depression was severe.14 However, the extent to which results of these case reports and longitudinal studies can be generalised is uncertain. We therefore investigated the effect of recovery from major depression on preferences for life-sustaining treatments in a group of patients referred to an Australian community psychogeriatric service. Methods Our study was approved by the Ethics Committee of the Hornsby Ku-ring-gai Hospital & Community Health Services and Ryde Hospital & Community Health Services. Patients and assessment Subjects for the study were drawn from consecutive patients referred to the Psychogeriatric Service of Hornsby Ku-ring-gai Hospital between October 1994 and January 1995. The Psycho geriatric Service is a community-based service with inpatient facilities, serving an area with over 29 000 elderly people. Inclusion criteria: Diagnosis of DSM-IV major depression,19 made by clinical interview with the consultant psychiatrist and senior psychiatric registrar of the Psychogeriatric Service, according to DSM-IV criteria (Box 1). Severity of depression (mild, moderate, severe) was also assessed clinically with DSM-IV criteria; Mini-Mental State Examination score (MMSE) > 17.20 This was used to screen out patients with significant cognitive impairment; and Informed consent given. Intensity of depression was assessed with the Geriatric Depression Scale (GDS). This is a rating scale (not a diagnostic instrument) that provides a numerical index of intensity of depression and was designed exclusively for use in elderly patients. It contains 30 questions requiring a yes or no answer, which can be either self- or observer-administered. One-week test-retest reliability of 0.85 and criterion validity of 0.82 have been recorded.21,22 Desire for life-sustaining treatment was assessed by a questionnaire adapted from Lee and Ganzini,13 with simplification of the hypothetical scenarios. Patients were asked to "imagine that you developed a sudden life-threatening illness with an uncertain chance of recovery". They were then asked, "Would you want the following procedures should they be needed?". These comprised intravenous fluids with medication, nasogastric tube, blood transfusions, intensive care, kidney dialysis, mechanical ventilatory support, and cardiopulmonary resuscitation. The question was repeated for a similar illness with a good chance of complete recovery. Desire for life-sustaining treatment was quantified by assigning a point for each treatment desired. Follow-up After standard treatment for major depression (including pharmacological agents in all cases and electroconvulsive therapy in two), clinical assessments, GDS and questionnaires were repeated. At least six weeks was allowed before follow-up as the elderly may take longer to respond to antidepressant treatment. Recovery (remission) from major depression was diagnosed clinically at follow-up interview if patients no longer met the DSM-IV criteria for major depression. Statistical analyses The paired t test was used to compare initial and follow-up GDS scores. The Wilcoxon signed-rank test (a non-parametric test) was used to compare initial and follow-up scores for the life-sustaining treatment questionnaire, scoring 1 for any increase and 0 for any decrease and ignoring patients who did not change. The binomial distribution was consulted, with parameters 0.5 and the number of people who changed preferences. Results Patients Of 25 consecutive patients referred with major depression to the Psychogeriatric Service during the study period, 22 were included in the study. Two failed to meet the inclusion criteria (one did not give informed consent and the other did not score sufficiently on the MMSE) and a third died before follow-up. Demographic characteristics of the 22 who completed the study are shown in Box 2. A notable feature was the very high proportion of women in the group (82%). All but four of the patients were new referrals to the service and 10 (46%) were reporting their first depressive disorder. None had a history of previous prolonged psychiatric hospitalisations or previous suicide attempts. Twelve patients (55%) were treated in their homes, eight (36%) were treated predominantly in an inpatient psychiatric unit and two (9%) predominantly in a medical ward. Follow-up after a mean of 88.5 days (SD, 26.3) showed no significant changes in the number of medical illnesses or in demographic variables. Intensity of depression Severity of the depression was classed as moderate for 16 patients (73%), severe for five (23%) and mild for one (5%). Mean GDS score for the group was 24.4 (SD, 3.3) and decreased significantly on follow-up to 16.7 (SD, 8.0) ( P < 0.0005). Individual GDS scores decreased ("improved") in 18 patients, and 12 of these (55% of the total number) were diagnosed clinically as recovered from major depression, according to DSM-IV criteria. Desire for life-sustaining treatment Changes in desire for life-sustaining treatment among those whose depression improved or recovered are shown in Box 3. There were significant increases in the number of interventions desired overall and for the "good prognosis" illness among both the 12 patients who recovered from depression (according to DSM-IV criteria for remission) and the 18 whose GDS scores improved (including six who were not classed as recovered by DSM-IV criteria). There were also increases in the number of interventions desired for the "uncertain prognosis" illness, but the change was significant only in the "recovered" group. Of the 12 patients who recovered, nine had had major depression of moderate severity. The number of interventions desired among these nine also increased significantly overall ( P = 0.05) and for the "good prognosis" illness ( P = 0.04), but not for the "uncertain prognosis" illness. Discussion We found that remission of major depression in the elderly was associated with a significant increase in acceptance of life-sustaining treatments. This increase occurred for both moderate and severe forms of major depression. However, our study has limitations which should caution against drawing firm general conclusions. The main limitations are the relatively small sample size and the possibility of a gender bias caused by the high proportion of female patients. We also do not know the correlation between responses to hypothetical questionnaires and actual decisions when confronted with an "end of life" situation. However, indicating preferences to hypothetical scenarios is similar to executing a "living will" (also, in effect, hypothetical). The hypothetical scenarios examined only acute, not chronic, illnesses, and the findings of this study cannot necessarily be generalised to patients who have coexisting life-threatening medical conditions. In addition, the word "uncertain", used to describe prognosis in one of the scenarios, may have been ambiguous, as all prognoses are uncertain. It was chosen to enable comparison with Lee and Ganzini's studies,13,14 but "poor" or "unfavourable" would have been less ambiguous. A further limitation involved the diagnostic assessments, which did not use structured diagnostic instruments. Our results vary from those of other longitudinal studies.13,14 Ganzini et al.14 found that recovery from major depression was associated with change in preferences for life-sustaining treatments only if the depression was severe. Lee and Ganzini13,14 concluded that, in major depression of mild to moderate severity, "patients should not be discouraged from completing advance treatment directives and that choices by these patients to limit treatment should be respected". However, our finding of a significant increase in the number of life-sustaining treatments desired by nine patients who recovered from major depression of moderate severity suggests that doctors should be cautious about adopting such an approach in the elderly with moderate major depression. Differences between the results of our study and those of Ganzini et al.14 may have been caused by differences between samples and methods. Their sample had a higher proportion of men (81% versus 18% in our study) and their questionnaire about life-sustaining treatments was more complex, possibly affecting subject comprehension and reducing the sensitivity of the instrument. They used DSM-III-R criteria to diagnose major depression, but the differences between these criteria and the DSM-IV criteria that we used are minor. However, neither set of criteria precisely defines the boundaries between mild, moderate and severe forms of major depression, allowing the possibility of diagnostic bias in classifying severity. Further, in analysing their data, Ganzini et al.14 defined a clinically evident increase in preference for medical therapy as an increase in desire for a mean of three or more of the 14 possible interventions. A different cut-off (e.g., two or more of the 14 interventions) would have led to different results. In addition, we allowed a longer time before follow-up than Ganzini et al.14 (mean, 88.5 days versus 24.5 days), and, although we found that degree of recovery measured by GDS was no greater, it is possible that preferences for life-sustaining treatments may take longer to improve than depression. Another possibility is that the longer follow-up period in our study allowed factors other than changes in level of depression to affect preferences. These studies highlight the potential for depression to influence patient desire for life-sustaining treatments, suggesting that clinicians would be wise to take into account patients' mental state when assessing refusal of life-sustaining treatments. If doubt exists about a patient's decisional capacity, or whether major depression is present, psychiatric consultation is indicated. In the absence of an advance directive (completed before the onset of depression), severely depressed patients' wishes to forgo life-sustaining treatments should not be respected until an attempt is made to treat the depression. In contrast, it appears reasonable to respect the wishes of mildly depressed patients, whereas in moderate major depression consensus is lacking. It would be prudent (until further studies clarify this question) to err on the side of preserving life and to treat moderate major depression of moderate severity before respecting a refusal of life-sustaining treatments. Furthermore, patients with moderate or severe major depression who are planning to write advance directives should be encouraged not to do so until their depression has been treated. In our patients whose depression "improved", we found no significant increase in number of life-sustaining treatments desired for an illness with uncertain prognosis. Although the lack of significance may have been due to the small sample size, it suggests that the prognosis of the illness should also be considered in clinical settings. When prognosis is so poor that treatment becomes futile, refusal of life-sustaining treatments should be respected regardless of the presence of major depression, in accord with the ethical and legal principle that doctors are not required to administer futile treatments. The ethical dilemma presented by a depressed patient with dubious decisional capacity who refuses life-sustaining treatments has received little attention. The physician who complies faces the prospect that the patient's decision was biased by the depression and would have reversed on recovery. The physician who does not comply faces the possibility that the request was authentic and the patient's life has been prolonged against his or her wishes. In resolving the dilemma, careful consideration should be given to the severity of the depression, the prognosis of the illness and whether treatment would be deemed futile, and also to any previous directives made by the patient when their decisional capacity was clearly intact. Acknowledgements We acknowledge the generous support of Dr R Russell (Psychogeriatrician, Royal North Shore Hospital), and Dr W Jenneke (Staff Specialist Psychiatrist, Hornsby Ku-ring-gai Hospital). References Greco P, Shulman K, Lavizzo-Mourey R. The patient self-determination Act and the future of advance directives. Ann Intern Med 1991; 115: 639-643. CCH Australia. Death with dignity. Australian Health and Medical Law Reporter. Sydney: CCH Australia Ltd, 1995: paragraph 22-360. Regier D, Hirschfeld R, Goodwin F. The NIMH depression awareness, recognition, treatment program. Am J Psychiatry 1988; 145: 1351-1357. NIH Consensus Development Panel on Depression in Late Life. Diagnosis and treatment of depression in late life. JAMA 1992; 268: 1018-1024. Eisenberg L. Treating depression and anxiety in primary care -- closing the gap between knowledge and practice. N Engl J Med 1992; 16: 1080-1084. Nielson C, Williams T. Depression in ambulatory medical patients: prevalence by self report questionnaire and recognition by nonpsychiatric physicians. Arch Gen Psychiatry 1980; 37: 999-1004. Rapp S, Walsh D, Parisi S. Detecting depression in elderly medical inpatients. J Consult Clin Psychol 1988; 56: 509-513. Appelbaum P, Grisso T. Assessing patients' capacities to consent to treatment. N Engl J Med 1988; 319: 1635-1638. Gutheil T, Bursztajn H. Clinicians' guidelines for assessing and presenting subtle forms of patient incompetence in legal settings. Am J Psychiatry 1986; 143: 1020-1023. Bursztajn HJ, Harding HP, Gutheil TG, Brodsky A. Beyond cognition: the role of disordered affective states in impairing competence to consent to treatment. Bull Am Acad Psychiatry Law 1991; 19: 383-388. Chochinov HM, Wilson KG, Enns M, et al. Desire for death in the terminally ill. Am J Psychiatry 1995; 152: 1185-1191. Wilkinson IM, Blackburn I. Cognitive style in depressed and recovered depressed patients. Br J Clin Psychol 1981; 20: 283-292. Lee M, Ganzini L. The effect of recovery from depression on preferences for life-sustaining therapy in older patients. J Gerontol 1994; 49: M15-M21. Ganzini L, Lee M, Heintz R, et al. The effect of depression treatment on elderly patients' preferences for life-sustaining medical therapy. Am J Psychiatry 1994; 151: 1631-1636. Salzman C. ECT and ethical psychiatry. Am J Psychiatry 1977; 134: 1006-1009. Weitzel W, Purtilo R. Aggressive treatment of geriatric depression: what limits on intervention? Psychiatr Opin 1979; 160: 9-14. Swartz C, Stewart C. Melancholia and orders to restrict resuscitation. Hosp Community Psychiatry 1991; 42: 189-191. Baile F, DiMaggio J, Schapira D. The request for assistance in dying. Cancer 1993; 72: 2786-2791. American Psychiatric Association diagnostic and statistical manual of mental disorders (DSM-IV). 4th ed. Washington DC: APA, 1994. Folstein M, Folstein S, McHugh P. "Mini-Mental State": a practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 189-198. Yesavage J, Brink T, Rose T. Development and validation of a geriatric depression screening scale: a preliminary result. J Psychiatr Res 1983; 17: 37-49. Koenig HG, Meador KG, Cohen HF, Blazer DG. Self-rated depression scales and screening for major depression in older hospitalized patient with medical illness. J Am Geriatr Soc 1988; 36: 699-796. (Received 30 Oct 1995, accepted 3 Jun 1996) Authors' details Department of Mental Health, Hornsby Ku-Ring-Gai Hospital, Sydney, NSW. Stuart C Hooper, FRANZCP, Senior Psychiatric Registrar in Psychogeriatrics; now Consultant Psychiatrist, Sydney, NSW; Kevin J Vaughan, FRANZCP, Staff Specialist. Department of Academic Psychiatry, Royal North Shore Hospital, Sydney, NSW. Christopher C Tennant, FRANZCP, MD, Professor. Department of Psychology, Faculty of Arts and Social Sciences, University of Western Sydney, NSW. Janette M Perz, BA(Hons), Research Psychologist. No reprints will be available. Correspondence: Dr S C Hooper, 11 Clanalpine Street, Eastwood, NSW 2122.

Stuart C Hooper · Kevin J Vaughan · Christoper C Tennant · Janette M Perz