Volume 164 Issue 1

Research Physical, sexual and emotional violence against women: a general practice-based prevalence study Danielle Mazza, Lorraine Dennerstein and Vicky Ryan Abstract - Authors' details - Introduction - Methods - Results - Discussion - Acknowledgement - References - Box 1 - Box 2 - Box 3 - Box 4 - Box 5 - ©MJA1996 - Abstract Objective: To determine the prevalence of domestic violence, childhood abuse and sexual assult experienced by women attending general practitioners. Design: A cross-sectional, questionnaire-based prevalence survey. Setting: 15 general practices in metropolitan Melbourne between November 1993 and February 1994. Subjects: 3026 women over the age of 18 attending for a consultation. Results: The response rate was 72%. Over a quarter of women in relationships had been victims of physical or emotional partner abuse in the previous year, one in 10 having experienced severe physical violence. Thirteen percent of women had experienced rape or attempted rape, 10% had been severely beaten during childhood and 28% had experienced childhood sexual abuse involving physical contact. The abuse had been disclosed to the woman's doctor by only 27% of those who had experienced partner or childhood physical abuse (mostly because the doctor had never asked) and 9% of those who had experienced sexual abuse (mostly because the woman did not see it as relevant to the consultation). Conclusion: There is a high prevalence of physical, sexual and emotional violence against women as well as poor communication about this violence to their general practitioners. Recommendation: Medical practitioners should be more proactive in questioning women about violence. (MJA 1996; 164: 14-17) Introduction Violence experienced by women results in significant morbidity and, in some cases, mortality. The experience of sexual abuse as a child has been linked to later development of psychological disorders1 and drug abuse and dependence.2,3 Domestic violence has health effects beyond the acute injuries; battered women are more likely to suffer from somatic complaints, anxiety and depression,4 pelvic pain,5 and sexual and gynaecological problems.6 They also use health services more often than women not subjected to domestic violence.7 Because of these associations and because victims of violence are more likely to turn to doctors for help than to any other person,8 they are highly likely to frequent a doctor's surgery. However, doctors are not skilled at recognising them and have been estimated to diagnose only one battered woman in 25.7 This may occur because doctors are unaware of the extent of physical and sexual abuse experienced by their female patients; while the prevalence has been studied in the United States and Europe, Australian data are sparse. The single authoritative study on the prevalence of childhood sexual abuse in Australia was conducted by Goldman and Goldman on a population of university students: 28% of female students and 9% of male students had experienced sexual abuse.9 Two recent studies have looked at the prevalence of domestic violence in Australia, but only in select populations: 23.3% of women attending an emergency department disclosed histories of domestic violence,10 while 8.9% of women in a hospital antenatal clinic stated that they had experienced physical abuse during their pregnancy.11 The aim of our study was to determine the prevalence of domestic violence, childhood abuse and sexual assault experienced by women attending general practitioners and to provide doctors with accurate information on the extent of the problem. Methods The study was a questionnaire-based prevalence survey carried out between November 1993 and February 1994. It was approved by the ethics committee of Monash University. Study population The study population comprised women over the age of 18 attending their general practitioner for a consultation. Fifteen general practices in metropolitan Melbourne were selected in a two-stage random sampling design described previously.12 The design incorporated practices that were broadly representative of all social classes, from all regions of metropolitan Melbourne. A total sample size of about 3000 women was calculated to be necessary to ensure adequate power, based on results of a pilot study; 220 questionnaires were therefore distributed to each practice. Questionnaire Consecutive women attending the practice for a consultation were invited to participate by the practice receptionist. The questionnaire was introduced by a covering letter, which explained the nature of the study, that it was voluntary and confidential, and that the information disclosed would not be entered in their medical file or given to their doctor. It was acknowledged that some questions might cause distress, and the questionnaire could therefore be completed either in the waiting room or at home and returned in a reply-paid envelope. Respondents were also given contact phone numbers of support services for the different forms of abuse, and informed that their doctor was happy to discuss with them any issues that might arise as a result of the survey. Before the study, doctors were given an information package with details of local support services for abused women. The self-administered questionnaire asked first for demographic details. Respondents then completed the Conflict Tactics Scale,13 with the modification that they were asked whether the tactic had occurred never, once or more than once in the last year, and with the addition of questions on emotional abuse. In accordance with the Conflict Tactics Scale, physical violence was classified as minor or severe (see Box 1). Questions about sexual abuse were derived from the studies of Wyatt14 and Russell,both of 15 which used multiple screening questions to allow time for the respondent to become accustomed to the nature of the questions. Childhood sexual abuse was classified as contact or non-contact (Box 1). Data were entered into a Microsoft Access database. Frequency tables were generated and prevalences calculated. Because the data came from 15 different general practices and not a simple random sample, confidence intervals (CIs) were adjusted for the effects of clustering.16 Results Of 3026 questionnaires distributed, 2181 were returned (response rate, 72%). Most questionnaires were completed in the waiting rooms of the practices, with only 18% of those answered returned by post. Domestic violence Prevalences for the different categories of domestic violence in the previous year are shown in Box 2. Only those women in a current relationship were asked to complete the section about domestic violence, so that the sample size was smaller than for other parts of the study. A total of 28% of these women had experienced either physical or emotional partner abuse, or both, in the previous year, and (notably) almost one in 10 had been victims of severe physical violence in that year. Among respondents in a current relationship 6% had been kicked, bitten or hit with a fist; 7% had been hit or their partner had tried to hit them with an object; 4% had been beaten up; 4% had been choked; 2% had been threatened with a knife or a gun; and 1% had actually had a knife or gun used against them. Twenty per cent of those in a current relationship had experienced emotional abuse in the previous year; 4% had their partner threaten or try to kill them; 8% had money withheld; 7% were prevented from leaving their home; 6% were stopped from seeing their friends and family or speaking to them on the phone; and 17% were constantly called names or humiliated. Adult sexual abuse Overall, 30% of women had been victim to some form of sexual abuse since the age of 16. Prevalences of different forms of abuse are shown in Box 3. Just over half of those who reported adult sexual abuse (356/626) had experienced more than one kind. Childhood abuse Overall, 10% of women experienced childhood physical abuse (95% CI, 8%-12%); 3% were severely beaten on one occasion and 7% repeatedly. Almost 40% of women had experienced some form of sexual abuse before the age of 16 (Box 3). Communication in general practice about violence The question about whether respondents had ever discussed the issues of domestic violence or childhood physical abuse with their doctors was answered by 1177 women. Among these only 27% had done so, although it was more likely among victims of domestic violence than among non-victims (Box 4). Most women (73%) said that their doctor had never asked them about these things, although this was less likely for victims than for non-victims. If respondents had experienced either childhood or adult sexual abuse, they were asked if they had ever disclosed this to their doctor; 1009 responded, only 87 (9%) in the affirmative. Reasons given for not disclosing are shown in Box 5. Discussion We believe that this study is the first to show the prevalence of physical, sexual and emotional abuse of women in an Australian general practice population. While we recognise that domestic violence and sexual abuse are not exclusively directed by men against women, the study found a high level of violence against women. Over a quarter of women in relationships had been victims of partner abuse in the previous year and one in 10 had experienced severe physical violence; 13% of women had experienced rape or attempted rape; 10% of women had been severely beaten during childhood; and 28% had experienced contact childhood sexual abuse. Despite these levels, few women disclose these events to their doctors. Our findings are similar to those of a family practice-based study in the United States, which found that 23% of women had been physically assaulted by their partners in the last year.17 In contrast,population-based studies in the United States and Canada estimate that between 10% and 14% of women in relationships experience physical abuse over a one-year period; for 3%-5% of women, the abuse is severe.18-22 Because domestic violence is associated with injury and illness, women sampled in medical environments would be expected to have a higher prevalence than women sampled in community settings. In fact, our findings may underestimate the true prevalence of domestic violence, as women who were separated or divorced were not questioned about their experience of it. We found a slightly higher prevalence of sexual abuse than that in a recent New Zealand community-based study, which found the prevalence of childhood sexual abuse overall to be 32%, with contact abuse in 25% and penetrative abuse in 4%.23 The differences are again probably due to the different populations sampled. Potential sources of bias exist. Because of the secret nature of physical and sexual abuse and the stigma attached, there is much controversy over whether self-disclosure by victims can give a true indication of prevalence. A self-administered questionnaire gives no opportunity for clarification of responses by an interviewer. It is also argued that victims will not respond because they fear that disclosure will cause further trauma. These factors would lower apparent prevalence.24 An alternative argument is that victims respond preferentially to surveys when given the opportunity to disclose; non-victims fail to respond as they feel they have no valid information to contribute.24 This would have the reverse effect on apparent prevalence; the two effects could simultaneously counterbalance each other. Another possible source of bias is that the self-administered questionnaire format may have precluded the participation of women from non-English-speaking backgrounds. However, with a sample size of over 3000 and a response rate of 72% (with over 80% of the surveys completed in the general practitioner's surgery), the questionnaire appears to have been well accepted by the subjects. Importantly, about three-quarters of respondents had never been asked by their doctors about domestic violence or childhood physical abuse. This is consistent with results of studies in other countries, which show physician enquiry rates into spouse abuse to be suboptimal.22,25 Contrary to prevailing belief,26 the main reason women did not discuss these issues with their doctor was not because they were afraid, embarrassed or untrusting, but because they were never asked. In addition, 53% of women had not disclosed their experiences of sexual abuse to their doctor because they had never found it relevant to the consultation. Either women are failing to make the connection between sexual abuse and their symptoms or their doctors lack knowledge of the short and long term health effects of sexual abuse. Doctors are crucially placed to deal with the problem of abuse. Our study suggests that medical practitioners must be more proactive in questioning women about violence. While many may hesitate to identify something they may be unable to directly treat,27 it is important to consider that when a diagnosis of abuse is missed treatment is likely to be inappropriate and potentially harmful.28 Detection is the first step in successful management to deal with both the immediate and long term effects of violence against women. This requires that medical practitioners not only develop the skills to diagnose violence perpetrated against women, but have knowledge of local agencies for referral as well as the legal and criminal options available to the woman. Acknowledgement This work was supported by a grant from the Shepherd Foundation in the Department of Community Medicine at Monash University. (©MJA 1996; 164: 14-17) References Mullen PE, Romans-Clarkson SE, Walton VA, Herbison GP. Impact of sexual and physical abuse on women-s mental health. Lancet 1988; 1: 841-845. Burnam MA, Stein JA, Golding JM, et al. Sexual assault and mental disorders in a community population. J Consult Clin Psychol 1988; 56: 843-850. Winfield I, George LK, Swartz M, Blazer DG. Sexual assault and psychiatric disorders among a community sample of women. Am J Psychiatry 1990; 147: 335-341. Jaffe P, Wolfe DA, Wilson S, Zak L. Emotional and physical health problems of battered women. Can J Psychiatry 1986; 31: 625-629. Schei B. Psycho-social factors in pelvic pain: a controlled study of women living in physically abusive relationships. Acta Obstet Gynecol Scand 1990; 69: 67-71. Schei B, Bakketeig LS. Gynaecological impact of sexual and physical abuse by spouse. A study of a random sample of Norwegian women. Br J Obstet Gynaecol 1989; 96: 1379-1383. Stark E, Flitcraft A, Zuckerman D, et al. Wife abuse in the medical setting. An introduction for health personnel. Domestic Violence Monograph Series No. 7. Washington, DC: US Government Printing Office, 1981. Dobash RE, Dobash RP. Violence against wives - a case against the patriarchy. New York: Free Press, 1979. Goldman R, Goldman J. The prevalence and nature of child sexual abuse in Australia. Aust J Sex Marriage Fam 1988; 9: 94-106. Roberts GL, O-Toole BI, Lawrence JM, Raphael B. Domestic violence victims in a hospital emergency department. Med J Aust 1993; 159: 307-310. Webster J, Sweett S, Stolz TA. Domestic violence in pregnancy. A prevalence study. Med J Aust 1994; 161: 446-470. Mazza D, Dennerstein L, Ryan V. Psychotropic drug use by women: current prevalence and associations. Med J Aust 1995; 163: 86-89. Straus MA. Measuring intrafamily conflict and violence: the Conflict Tactics (CT) Scales. J Marriage Fam 1979; 41: 75-88. Wyatt GE. The sexual abuse of Afro-American and white-American women in childhood. Child Abuse Negl 1985; 9: 507-519. Russell DEH. The incidence and prevalence of intrafamilial and extrafamilial sexual abuse of female children. Child Abuse Negl 1983; 7: 133-146. Rao JNK, Scott AJ. A simple method for the analysis of clustered binary data. Biometrics 1992; 48: 577-585. Hamberger LK, Saunders DG, Hovey M. Prevalence of domestic violence in community practice and rate of physician inquiry. Fam Med 1992; 24: 283-287. Rollins BC, Oheneba-Sakyi Y. Physical violence in Utah households. J Fam Violence 1990; 5: 301-309. Schulman MA. A survey of spousal violence against women in Kentucky. Study No. 792701 conducted for the Kentucky Commission on Women. Washington, DC: US Government Printing Office, 1979. Smith MD. The incidence and prevalence of woman abuse in Toronto. Violence Vict 1987; 2: 173-187. Straus MA, Gelles RJ, Steinmetz SK. Behind closed doors: violence in the American family. New York: Anchor, 1980. Straus MA, Gelles RJ. Societal change and change in family violence rates from 1975 to 1985 as revealed by two national surveys. J Marriage Fam 1986: 48; 465-479. Anderson J, Martin J, Mullen P, et al. Prevalence of childhood sexual abuse in a community sample of women. J Am Acad Child Adolesc Psychiatry 1993; 32: 911-919. Finkelhor D. A sourcebook on child sexual abuse. Beverley Hills: Sage Publications, 1986. Martins R, Holzapfel S, Baker P. Wife abuse: are we detecting it? J Wom Health 1992; 1: 77-80. Queensland Domestic Violence Task Force. Beyond these walls. Brisbane: Queensland Government, 1988. Brown JB, Sas G. Focus groups in family practice research: an example study of family physicians- approach to wife abuse. Fam Pract Res J 1994; 14: 19-28. Council on Ethical and Judicial Affairs, American Medical Association. Physicians and domestic violence. Ethical considerations. JAMA 1992; 267: 3190-3193. (Received 19 May, accepted 6 Oct 1995) Authors' details University of Melbourne, Melbourne, VIC. Danielle Mazza, FRACGP, DRACOG, Lecturer, Key Centre for Women's Health; formerly Assistant Lecturer, Department of Community Medicine, Monash University, Melbourne, VIC. Lorraine Dennerstein, AO, PhD, FRANZCP, Director, Key Centre for Women's Health. Vicky Ryan, MSc, Statistician, Statistical Consulting Centre. (©MJA 1996; 164: 14-17)

Danielle Mazza · Lorraine Dennerstein · Vicky Ryan

Human hydatidosis in New South Wales and the Australian Capital Territory, 1987-1992 David J Jenkins and Karen Power Abstract - Authors' details - Introduction - Methods - Results - Discussion - Acknowledgement - References - Box 1 - Box 2 - Figure 1 - Figure 2 - Figure 3 - ©MJA1996 - For editorial comment, see McCullagh Objective: To determine the prevalence of human hydatidosis in New South Wales and the Australian Capital Territory. Methods: Data on human hydatid infection occurring between 1987 and 1992 were collected retrospectively from 25 hospitals and 13 health services in New South Wales and four hospitals in the Australian Capital Territory. Mean annual prevalences of human hydatidosis were determined for shires in eastern New South Wales and data on infection in immigrants and Australian-born patients were compared. Results: 321 patients were diagnosed with hydatid disease, 1987-1992; 195 were new cases and 117 readmissions (nine cases were not identified as new or recurrent). Most patients lived in the eastern half of New South Wales (which includes the Australian Capital Territory), half in rural areas and half in the major coastal cities. Most Australian-born rural patients lived in 39 shires in the north-eastern and south-eastern Tablelands. Sixty per cent of the patients in major cities were born overseas. Conclusions: Hydatid infection occurs more commonly in south-eastern Australia than the official figures suggest. In rural areas of the north-eastern and south-eastern Tablelands hydatid infection is of public health importance. The national notification system must be improved and control campaigns alerting the public to the dangers of hydatid infection promoted. (MJA 1996; 164: 18-21) Introduction The tapeworm genus Echinococcus is an important zoonosis which is endemic in many parts of the world. The only species occurring in Australia is Echinococcus granulosus. It was probably introduced with infected domestic livestock during European settlement and is now widespread in domestic livestock and wildlife, with wildlife acting as an important reservoir.1 Dogs (domestic and wild) and foxes are the definitive hosts (Figure 1). Humans become infected by the ingestion of eggs passed in faeces of dogs. Oncospheres released from the eggs penetrate the intestinal mucosa and, via the portal system, lodge in the liver, lungs, muscle or other organs, where the hydatid cysts form. Because of inadequate reporting, the prevalence of human hydatid infection in Australia is unknown. From the earliest published studies human hydatidosis in New South Wales has occurred mainly in people living in rural areas in the eastern half of the State associated with the Great Dividing Range.2-4 Dew, in 1928, reported a relatively even distribution of patients with hydatidosis in eastern New South Wales, but subsequent reports showed an increasing trend for patients to be concentrated in the north-eastern and south-eastern Tablelands.3-5 To assess the health risk associated with E. granulosus, a retrospective survey of hydatid infection was conducted between 1987 and 1992 by examining records of patients with hydatidosis from hospitals and health services in New South Wales (NSW) and the Australian Capital Territory (ACT). Methods All the public and private hospitals and area and district health services in NSW and the ACT were asked to supply data of patients with confirmed hydatidosis who were admitted between January 1987 and December 1992. After approval of our written request, all institutions ( four hospitals in the ACT and 25 hospitals and 13 health services in NSW ( supplied data comprising: - Sex; - Date of admission; - Date and country of birth; - Place of residence at admission; - Cyst location; and - Whether the infection was new or recurrent. We maintained patient confidentiality by using initials only for individual identification. Multiple admissions for the same patient were identified from admission dates, initials, age, sex and general location of residence at the time of admission. We calculated mean annual prevalences of infection using 1991 Census data.6 Results Three hundred and twenty-one patients with confirmed hydatidosis were treated between 1987 and 1992. These comprised 195 new cases (107 males and 88 females), 117 recurrent cases (27 cases had their first treatment before this survey began) and nine cases not identified as new or recurrent. Two hundred and eighty-two patients (172 new cases and 110 recurrent cases [including those not classified as new or recurrent]) were treated in NSW and 39 patients (23 new cases and 16 recurrent and unclassified cases) were treated in the ACT (16 and 14, respectively, of those treated in the ACT lived in NSW). Rural patients Except in three cases, hydatid infection in rural patients, most of whom were Australia-born, occurred in the eastern half of NSW at higher altitudes, mainly associated with the Great Dividing Range (Figure 2). There were concentrations of patients in the north-eastern and south-eastern Tablelands, and these two areas were connected by a corridor parallel to the coast where further cases occurred. The mean annual prevalence of human hydatidosis in rural NSW was 2.6 cases per 100 000 rural population. Cases occurred in 15 shires [counties] in the north-east and 24 shires in the south-east. On a shire-to-shire basis, the mean annual prevalence of infection ranged from 0.3 to 17.7 and 0.5 to 23.5 (cases per 100 000 population), respectively, in these two areas (Box 1). Four of the cases (three new and one recurrent) were in Aboriginal people. These four cases represented a mean annual prevalence of hydatid infection of 1.1 cases per 100 000 in the Aboriginal population of NSW. Urban patients There were 152 cases diagnosed from the three major metropolitan centres of NSW (Sydney, Newcastle and Wollongong), which included 98 new cases, mostly in patients born overseas (60%); in rural areas the reverse was evident (85% of rural patients were born in Australia). Of the patients born overseas, all were living in NSW, except one ACT resident. The mean annual prevalence of infection was calculated for 25 ethnic groups (each with a population of over 1000) resident in NSW (Box 2). The highest mean annual prevalence occurred in the Iranian population (6.6 cases/100 000) and the lowest in the German population (0.5 cases/100 000). Most cases came from the Greek and Lebanese communities and communities of people from the former Yugoslavia (13, 10 and 8, respectively), but because of their relatively large populations in NSW, these cases represented only a mean annual prevalence of 4.8, 3.2 and 2.2, respectively. Age distribution Age-group distribution profiles of the patients born in Australia and those born overseas are compared in Figure 3. All age groups are represented among Australian-born patients with hydatidosis, especially the older age groups, whereas the immigrant population, being generally younger, has fewer cases in the older age groups. Cyst location Infection in the liver occurred most commonly (157 of the 195 new cases); 13 cases involved infection in the lungs and four had infection in both liver and lungs. Infection in other less common sites were two each in the spleen, pancreas and leg muscle and one each in the diaphragm, pelvic area, arm muscle, brain, adrenal gland and gallbladder. Discussion Retrospective survey data on human hydatidosis cannot give an accurate picture of the prevalence of infection. A number of cases are not seen in hospitals because the infection is asymptomatic, or does not require surgical intervention, and mistakes in coding may occur. However, these data remain a useful indication of infection prevalence. Our study confirmed the concentration of hydatidosis in the north-eastern and south-eastern Tablelands reported previously.3-5 The narrow corridor parallel to the coast in the central part of the State is an area where there have been few cases reported previously, but where considerable urban development has occurred over the last decade, and previously undiagnosed patients may have moved to this region. Population movement from country areas to cities may also account for many of the Australian-born patients diagnosed in urban areas. However, it is also possible for urban residents to be exposed to eggs of E. granulosus. Recent studies have identified infection with E. granulosus in dogs of a recreational pig hunter living in suburban Perth,7 and in dogs of Perth residents living in uncleared areas on the outskirts of the city.8 Foxes infected with E. granulosus have been found in the suburbs of Canberra.9 The older age of the Australian-born compared with the immigrant patients largely reflects the different age-group structures of the two groups. In 1990, 88.3% of immigrants were aged less than 45 years when they arrived in Australia and 27.4% were less than 14 years of age.10 Migrants may be already infected when they arrive as children, but the long latent period of hydatid disease means it is first detected in adulthood. It is difficult to explain why most Australian-born patients were detected in the age group 31 to 40 years whereas most immigrants were not detected until 41 to 50 years. Infections in immigrants may be caused by a different strain type of E. granulosus with a slower cystic growth rate. Alternatively, there may be a reluctance among newer immigrants to consult local doctors. The migrants infected with hydatid disease origin(Box 2)ated in countries where E. granulosus is endemic. The order of ranking of countries according to the mean annual prevalence of hydatid infection in their migrant populations in NSW closely reflected the relative importance of human hydatidosis in their countries of origin. The range of prevalences in the migrant populations were no higher than those recorded in shire populations in north-eastern and south-eastern NSW. In at least three of these shires the prevalence of human hydatidosis was two to three times higher than the highest level recorded in a migrant population. Three of the urban patients and one of the rural patients born in Australia were Aboriginals. The three urban Aboriginal patients are likely to be from a rural background, but as their place of birth was unknown it was not possible to calculate a prevalence of hydatid infection for rural Aboriginal people. The mean annual prevalence of 1.1 cases per 100 000 for the total Aboriginal population of NSW is about a third of the prevalence in the rural non-Aboriginal population. Few cases of hydatid disease in Aboriginal people have been reported. All the reports are from studies in Western Australia during the 1970s, where Aboriginals were always highly represented: 15/57 cases11 and 13/31 cases.12 Our data represent the first report of hydatid infection in Aboriginal people in NSW; a previous study reported E. granulosus infection in a dog from a NSW Aboriginal community.13 The reason for human hydatidosis not being perceived as a problem in Australia can be attributed largely to under-reporting of this notifiable disease;5 this has been a problem for many years,,5,12,14,15 with no signs of improvement. Only 17 of the 321 new and recurrent cases identified in this study had been notified, and in a retrospective study in Victoria for the 12 months up to July 199116 only two of the 50 new or recurrent cases had been notified. Disease recurrence after operative treatment is an important aspect of human hydatid infection. A carefully conducted follow-up study of 39 patients treated surgically in Australia first drew attention to this problem;17 22% had had recurrent infection by 30 months, mainly caused by cyst rupture before surgery. In our study, 37.5% of patients (for whom information on new or recurrent infection status was supplied) were treated for recurrent infection. Effective chemotherapy of patients with hydatid infection would substantially reduce the cost of treatment. This topic has been reviewed,18 and the most promising drug studied was albendazole. Data from studies on 253 patients indicated that albendazole was an effective cure in 28%, 51% showed improvement, 18% were unchanged and in 2% the cysts continued to grow.19 The most appropriate use of albendazole may be as an adjunct to surgery. Rupture of cysts and spilling of protoscoleces (which can form new cysts) into the body cavity during surgery is a constant risk, but an immediate postoperative course of albendazole will greatly reduce the chance of new cysts developing.20 Hydatid disease is preventable, and education is one of the most effective tools to achieve this. It is important that State and Federal governments take a responsible attitude towards increasing community awareness, and implement control strategies through education, either by themselves or by funding organisations such as the Australian Hydatid Control and Epidemiology Program. Control of this parasite in Australia requires a long term commitment; the alternative is that hydatid disease will continue to incapacitate individuals and be an additional financial drain on an already overstretched health service. Acknowledgements The authors gratefully acknowledge the assistance of the staff of the medical records departments of the following hospitals: Albury, Armidale and New England, Bathurst, Broken Hill, Calvary (ACT), Camperdown, Casino and District, Cooma, Dubbo, Goulburn, Grafton, Grenfell, Griffith, Inverell, John James Memorial (ACT), Lismore, Orange, Parkes District, Prince Henry, Prince of Wales Children's, Queanbeyan, Royal Canberra (ACT, now closed), Royal North Shore, Royal Prince Alfred, St Vincent's, St Vincent's Private, Tamworth, Wagga Wagga, Westmead and Woden Valley (ACT); also the following area and district health services: Brunswick-Byron, Central Coast, Cooma, Hunter, Illawarra, Macleay Valley, Manning Valley, Queanbeyan, South Western Sydney, Southern Sydney and Tumut, Wentworth. We also thank Ms Celia Moss (Australian Bureau of Statistics) and Ms Irene Pasaris (ACT Health Department) for their help and advice and Dr M W Lightowlers, Dr E Bennet, Dr P McCullagh and Professor R C A Thompson for their suggestions in the preparation of the manuscript. This study was funded partly through contributions from the Shire Councils of Bega Valley, Boorowa, Cooma-Monaro, Crookwell, Gunning, Harden, Snowy River, Tumbarumba, Yarrowlumla, Yass and Young, Queanbeyan City Council and the ACT Health Authority. Dr Jenkins' salary was funded by the National Health and Medical Research Council of Australia. (©MJA 1996; 164: 14-17) References Schantz PM, Chai J, Craig PS, et al. Epidemiology and control of hydatid disease. In: Thompson RCA and Lymbery AJ, editors. The biology of Echinococcus and hydatid disease. Wallingford, UK: C A B International, 1995: 233-302. Dew HR. Hydatid disease. Its pathology, diagnosis and treatment. Sydney: The Australasian Medical Publishing Company Ltd, 1928. Christopher PJ, Lopez WA. Hydatid disease notifications in New South Wales. Med J Aust 1970; 1: 54-56. Little JM. Hydatid disease at Royal Prince Alfred Hospital, 1964 to 1974. Med J Aust 1976; 1: 903-908. Schreuder S. Survey of hospital admissions for hydatidosis in New South Wales and the Australian Capital Territory, 1982-1987. Aust Vet J 1990; 67: 149-151. Australian Bureau of Statistics. 1991 Census of population and housing. State comparisons. Canberra: ABS, 1993. (Catalogue No. 2731.0.) Thompson RCA, Lymbery AJ, Hobbs RP, Elliot AD. Hydatid disease in urban areas of Western Australia: an unusual cycle involving western grey kangaroos (Macropus fuliginosus), feral pigs and domestic dogs. Aust Vet J 1988; 65: 188-190. Thompson RCA, Robertson ID, Gasser RB, Constantine CC. Hydatid disease in Western Australia: a novel approach to education and surveillance. Parasitol Today 1993; 9: 431-433. Jenkins DJ, Craig NA. The role of foxes Vulpes vulpes in the epidemiology of Echinococcus granulosus in urban environments. Med J Aust 1992; 157: 754-756. Australian Bureau of Statistics. Migration, Australia. Canberra: ABS, 1994. (Catalogue No. 3412.0.) Joske RA. The changing pattern of hydatid disease, with special reference to hydatid of the liver. Med J Aust 1974; 1: 129-132. Stein GR, McCully DJ. Hydatid disease in Western Australia (1957-1967). Med J Aust 1970; 1: 848-850. Jenkins DJ, Andrew PL. Intestinal parasites in dogs from an Aboriginal community in New South Wales. Aust Vet J 1993; 70: 115-116. Davies P, Nicholas WL, Beard TC. Hospital records of hydatid disease in Victoria for 1970 to 1974. Med J Aust 1977; 2: 493-495. Beard TC. Hydatids in Australia ( the present position in man. Aust Vet J 1979; 55: 131-135. Taylor K. Hydatids in 1992: public health lessons. Update. A quarterly bulletin of infectious diseases. Victoria: Department of Health and Community Services, 1993; 2: 63-64. Little JM, Hollands MJ, Ekberg H. Recurrence of hydatid disease. World J Surg 1988; 12: 700-704. Morris DL, Richards KS. Hydatid disease current medical and surgical management. Oxford: Butterworth-Heinemann Ltd, 1992: 94-118. Horton RJ. Chemotherapy of Echinococcus infection in man with albendazole. Trans R Soc Trop Med Hyg 1989; 83: 97-102. Morris DL, Taylor DH. Optimal timing of postoperative albendazole prophylaxis in E. granulosus. Ann Trop Med Parasitol 1988; 82: 65-66. (Received 11 Apr, accepted 27 Sep 1995) Authors' details Australian Hydatid Control and Epidemiology Program, Canberra, ACT. David J Jenkins, MSc, PhD, Research Officer. Karen Power, BApplSci, Field Officer.

David J Jenkins · Karen Power

MJA Practice Essentials Psychosocial support, treatment of metastatic disease and palliative care Michael A Ashby, David W Kissane, Geoffrey F Beadle, Alan Rodger MJA 1996; 164: 43-49 Psychosocial support - Principles of oncological treatment of metastatic breast cancer - Complementary or alternative therapies - Palliative care - Conclusion - Acknowledgement - References - Further reading and reference material - Authors' details - - This article deals with four linked but distinct aspects of care for women with breast cancer, with an emphasis on the pivotal role of the general practitioner: Modern medicine is fast recognising the need for psychosocial support of patients; in fact, for an integrated approach to caring for the whole person at all stages of illness. Oncological treatment of metastatic disease needs to be individualised and based on realistic expectations of outcome balanced against side effects. An open dialogue about the role and appropriateness of so-called "alternative" or "complementary" therapies is needed. Despite significant improvements in palliative care quality and access in Australia in the last decade, many practitioners still require support and advice in this demanding area of care (particularly about difficult symptom control). Psychosocial support Women with breast cancer are likely to experience various psychosocial problems at different stages of their illness (Box 1). The most useful way of differentiating between a normal grief reaction and a classifiable psychiatric disorder is to assess the degree to which the distress is generating undesirable personal, family and social effects and to monitor intensity of symptoms. To assist with the diagnosis of depression in the presence of a medical illness, the Endicott9 criteria (depressed appearance, social withdrawal or decreased talkativeness, brooding, self-pity or pessimism, and a lack of appropriate responsiveness in situations that would normally be pleasurable) can be used in place of somatic symptoms like fatigue, anorexia, weight loss and poor concentration. Psychosocial morbidity can extend throughout the family. It has been shown that for those women who enter palliative care programs, substantial psychological morbidity is identifiable in half the patients, a third of spouses and a quarter of their offspring.10 Family-centred care that recognises family members not only as primary care providers but also as second-order patients is essential.7 There is a clear role for general practitioners in this process, as an integral part of good family medicine practice. The themes which need to be addressed are summarised in Box 2. Therapeutic interventions should be appropriate to the stage of the disease and the woman's personal situation (Box 3). Good clinical care requires that medical, surgical and nursing staff provide opportunities for patients to express their concerns, anxieties and preoccupations throughout routine management. Coping skills and cognitive behaviour therapies11 may be more applicable to early stage disease, while supportive psychotherapies which encourage the sharing of feelings about existential concerns are more suited to patients with metastatic cancer.12 Another approach utilises the central concept of loss. Women with breast cancer grapple with many losses -- their health, breast, sense of femininity, confidence, dreams and belief in the future. A primary goal, therefore, is to facilitate adaptive grieving. So-called grief therapy13 can be pivotal in much cancer counselling, particularly in the light of the pervasive pressure on women "to think positively". It is also important to deal with the possibility of death. Education and clarification of fears can help promote a sense of realism-based mastery. Group therapies are cost-effective, provide a supportive network and are acceptable to about two-thirds of women. Pharmacological treatments complement psychotherapeutic approaches (see Box 4). Major tranquillisers and benzodiazepines can allay anxiety, assist in crises and help to contain distressing features of delirium. Tricyclic antidepressants and selective serotonin reuptake inhibitors help in depressive disorders. They are prescribed for major depression, when sleep disturbance or other depressive symptoms are moderate in degree and when poor coping and chronic grief are persisting. Reduced sex drive2 and reduced frequency of intercourse invariably follow the initial diagnosis. Open communication about intimacy and sexuality is desirable and may need to be initiated by clinicians. The general practitioner should be approachable for first contact on these issues. Clarification of the role of altered body image, grief, depression, the nature of the relationship and adjustment of both partners is necessary before endocrine assessment is considered. Although at present psychological interventions are usually offered only to those who have become symptomatic or are perceived to be particularly at risk, recent studies suggesting an association between psychological wellbeing and survival compel us to consider whether such therapies should be offered routinely.12,14,15 The experience of stressful life-events, loss of hope, helplessness, social isolation and failure to share negative emotions have all been associated with poorer outcome.16 Large multicentre replication studies of group therapy for women with both early stage and metastatic breast cancer are currently proceeding in the United States, Canada and Australia, in the hope of clarifying how critical this role of support and coping is to overall survival. Principles of oncological treatment of metastatic breast cancer Metastatic breast cancer is incurable, but effective palliative treatment is possible for most patients. The five-year survival is about 5%-10%. In view of the variable natural history, treatment plans have to be tailored to the needs of each patient. Surgery, radiotherapy and systemic treatments have important and varying roles during the course of the disease. The relative value of each treatment is influenced by the dominant site(s) and distribution of metastastic spread, the severity of symptoms, the general condition of the patient, rate of progression of the disease and response to previous treatments. It is crucial with all forms of palliative therapy -- local or systemic -- that the benefits in terms of symptom control are weighed against the expected toxicities of treatment. The patient must be involved in these decisions as expectations, tolerances and wishes will vary. Advice and support of general practitioners and palliative care staff may be useful to complement the input of the oncologist. Systemic therapies Approximately 30%-35% of patients with metastatic breast cancer respond to endocrine treatment and 60%-70% to cytotoxic drug treatment. Box 5 summarises the principles of selection of these treatments. The therapeutic effect of endocrine treatment is mediated through the oestrogen and progesterone receptors, and the most important single characteristic predicting response to hormone therapy is the original tumour receptor status (rate of response 50%-60% if receptors are present, 10% if absent). Resistance to initial endocrine treatment is associated with a very small chance of a response to subsequent hormone manipulation, but progression after a good initial response is an indication to continue with second and even third line endocrine therapy until the disease becomes hormone resistant. In practice, patients rarely respond to more than two sequential endocrine treatments. Endocrine therapy: For premenopausal patients ovarian ablation (by oophorectomy or radiation) may be replaced by medical treatment with the luteinising hormone-releasing hormone agonists (e.g., goserelin and leuprorelin acetate). For postmenopausal women the antioestrogen tamoxifen and oral progestogens (medroxyprogesterone acetate and megestrol acetate) are the most commonly prescribed treatments. Aromatase inhibitors (e.g., aminoglutethimide and formestane [4-hydroxy androstenedione]) have replaced adrenalectomy for those postmenopausal patients who have exhibited protracted responses to initial endocrine treatment. Chemotherapy: The initial high response rate of metastatic breast cancer to cytotoxic drugs and the eventual development of resistance raise several important issues in management. Combinations of cytotoxic drugs offer a better chance of response than single agents, but do not yield substantially better survival for most patients. The exception is those patients with life threatening visceral metastases (normally in liver and lung). Regimens including anthracyclines (doxorubicin, epirubicin) are the most effective and are useful for aggressive or life threatening disease. Less aggressive disease may be treated with less toxic regimens, frequently based on mitozantrone, although there are a considerable number of alternative options. Second and even third line regimens are indicated when disease progresses after an initial response, but response rate and duration are usually less with each subsequent regimen. All treatments must be presented to patients as a balance between a potentially beneficial tumour response and unwanted cytotoxic effects. Studies of dose intensification of cytotoxic drugs suggest higher rates of response but only a minor improvement in survival. The logical extension of these observations is the application of very high doses of cytotoxic drugs followed by bone marrow rescue, in an attempt to achieve maximum tumour control. Initial results indicate high rates of response, but the ultimate worth of these treatments awaits further evaluation and their use should be confined to assessment in randomised controlled trials. Alternative approaches include constant infusional chemotherapy, such as fluorouracil given over many weeks, often with low toxicity. Newer agents such as taxol have been extensively researched and are likely to be approved for second or third line treatments. The sensitivity of metastatic breast cancer to both cytotoxic and hormonal treatments and their different mechanisms of action make combined treatments attractive. However, the results of a trial comparing sequential and concurrent administration of tamoxifen and cytotoxic drugs (doxorubicin and cyclophosphamide) failed to demonstrate better survival with combined modality treatment.17 One Australian study comparing standard (continuous) and less intensive (intermittent course) cytotoxic drug treatment showed that the control of symptoms and quality of life were superior in the group receiving continuous chemotherapy, with a longer time to progression of cancer and better survival in this group.18 A follow-up study evaluating the physician's assessment of quality of life showed that those patients assessed as having better quality of life at the time of entry into the study also had better survival.19 It remains to be determined at what point dose intensity and better survival in metastatic breast cancer will be offset by unacceptable quality of life, and the study should not be interpreted as justifying the routine use of chemotherapy for advanced disease in the absence of defined symptoms. It is also possible that the patients receiving the more intensive treatment believed (despite information to the contrary) that they had a better chance of cure or remission. Patients' beliefs about treatment goals certainly require more research and understanding, for both standard and alternative therapies. Radiotherapy: Radiotherapy plays a major part in the palliation of a variety of localised symptoms. Box 6 lists the role of palliative radiotherapy, which can generally be given in one to five (daily) fractions, frequently on an outpatient basis, with the reasonable expectation of a significant impact on symptom control for most patients. A randomised study of bone pain palliation has confirmed that short courses are as effective and non-toxic as longer courses of two weeks or more.20 Complementary or alternative therapies Interventions such as massage, relaxation, aromatherapy, hypnotherapy, acupuncture and homoeopathy have gained widespread acceptance. The use of alternative therapies (such as naturopathy, nutritional, immunological or physical treatments) is also common, and may set the patient and clinician on a direct path of conflict which can be difficult to resolve. Consequently, many patients do not tell their clinicians that they are using them.21,22The need for patients to participate in decisions about treatment should be emphasised at all times. Doctors should recognise the limitations of modern oncological treatment, and be prepared to acknowledge the patient's need to explore other avenues. It is often helpful for doctors to offer to comment on this issue and such an offer is rarely rejected. There may be times when doctors feel that they must advise patients of a dangerous or futile treatment, with the occasional possibility of real harm being caused, and it should be pointed out that many therapies are completely untested. Sometimes it is helpful to differentiate between therapies which patients believe might cure them and those that help them to live more comfortably with their disease. Gentle exploration of patients' beliefs about potential curability of their disease may be important. Positive thinking strategies which obstruct appropriate care delivery for a dying patient may also need skilful addressing. Palliative care Modern palliative medicine offers a model of care which focuses on the whole person, within their social and emotional context. There is a difference between the adoption of a palliative approach and the delivery of holistic, multidisciplinary care appropriate to the individual patient's needs and wishes. It is not simply a matter of knowing when to stop oncological treatment, nor of a "cookbook" style of symptomatic management. The focus must be on the person rather than the disease, although a good knowledge of the natural history of the disease and relevant oncological practice is essential. Active oncological intervention is often required for malignant bone pain, fungating chest-wall disease or liver, lung or brain metastases, and can be of value until a very late stage in the disease process. About 10% of patients with metastatic breast cancer will develop symptomatic hypercalcaemia (symptoms include nausea, vomiting, polyuria, drowsiness) and should be treated with intravenous rehydration, diuretics and a bisphosphonate infusion. Pleural effusions may require aspiration if symptomatic. If they recur, pleurodesis with talc, tetracycline or BCG may be required for control of breathlessness. Meningitic carcinomatosis is very rare and may respond to intrathecal cytotoxic agents or craniospinal irradiation. It is important that the general practitioner be fully informed of the patient's management and condition. During a long disease course, often with multiple oncological events, it is all too easy (and understandable) for patients and families to become attached to a hospital oncology service and its staff. This may pose problems for palliative and terminal care at home, as a hitherto relatively uninvolved general practitioner may have to suddenly take over care. See Box 7 for definition of palliative care. Early referral to a specialised palliative care source should be considered for most patients with metastatic disease, to introduce future options in palliative care. Although sometimes confronting for patients and their oncological caring team, a commitment of future support and proper care planning is of real value in allowing patients to plan to live until they die. The general practitioner should be actively involved in this process of communication to ensure the smoothest possible transitions from curative to palliative and terminal care. In psychosocial support, emphasis is often required on issues of family history (anxieties about daughters developing the disease), body image and loss of femininity, although concerns about the latter may be less pronounced than at initial diagnosis. For younger women with children, death will leave the children without a mother, which is probably the hardest aspect for a woman to bear. Work on helping to hand over present and future parenting roles is required. The proper and appropriate use of opioid drugs is an essential skill for control of pain and shortness of breath. Nearly 30 years of safe international clinical experience has led the World Health Organization to recommend morphine as the opioid of first choice in cancer pain management.23 Other drugs (either alone or in combination with morphine) are usually required for deep somatic pain caused by bone metastases or liver capsule inflammation (non-steroidal anti-inflammatory drugs and corticosteroids), and neurogenic pain (antidepressants, anticonvulsants, membrane stabilising agents). Specialist help is nearly always required for neurogenic pain, often with the additional involvement of an anaesthetist with a special interest in cancer pain management. The regular oral administration of the right dose of an appropriate drug or drug combination is the cornerstone of modern cancer pain management. The dose of morphine is adjusted according to the patient's top-up (or "breakthrough") requirements. The management of cancer pain with morphine is somewhat unusual in that there is no absolute upper dose limit. Most patients will achieve initial pain control on an oral 24-hour morphine dose in the range of 100-200 mg, but there is very wide individual variation and if the dose continues to rise without response the cause of the pain and the drug choice should be reassessed. Advice about anticipated side effects and their prompt and effective management is essential, together with frequent review of pain control and analgesic dose. Intermittent subcutaneous injections or infusions may be used if the oral route is not possible (e.g., because of nausea and vomiting), or not effective. Shortness of breath, anxiety, acute delirium and so-called terminal restlessness may be managed with anxiolytic drugs such as diazepam, midazolam or clonazepam (after looking for a specific treatable underlying cause). Antiemetics also require regular administration in adequate doses, and may need to be used in combination (e.g., prochlorperazine 25 mg rectally 3-4 times daily with metoclopramide 30-90 mg per 24 hours by subcutaneous infusion). Bowel care is important (and often neglected) throughout the illness, but particularly towards the end of life. Most patients taking morphine will require a regular prophylactic aperient. Intensification of supports and symptomatic treatment will usually be required as death approaches, particularly if the patient and family have chosen for this to occur at home with the help of a domiciliary palliative care team (Box 8). Conclusion Doctors are being challenged to focus on the needs of the whole person and to work collaboratively with colleagues from other disciplines. Psychosocial support may be required from the time of diagnosis and should be an intrinsic part of caring throughout the course of the illness. It is also now widely accepted that there is more to the management of incurable disease than tumour regression alone, and therapeutic interventions need to be critically assessed on the basis of their impact on palliative endpoints, quality of life and psychological well-being. Acknowledgement We thank Dr Angela Rutherford, General Practitioner, East Brunswick Medical Centre, Victoria, for her comments and assistance. References Walker LG, Cordiner CM, Gilbert FJ, et al. How distressing is attendance for routine breast screening? Psycho-Oncology 1994; 3: 299-304. Fallowfield LJ, Hall A, Maguire GP, et al. Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial. BMJ 1990; 301: 575-580. Silberfarb PM, Maurer LH, Crouthamel CS. Psychological aspects of neoplastic disease: 1. Functional status of breast cancer patients during different treatment regimens. Am J Psychiatry 1980; 137: 450-455. Dean C. Psychiatric morbidity following mastectomy: preoperative predictors and types of illness. J Psychosom Res 1987; 31: 385-392. Bukberg J, Penman D, Holland JC. Depression in hospitalised cancer patients. Psychosom Med 1984; 46: 199-212. Maguire P. The repercussions of mastectomy on the family. Int J Fam Psychiat 1981; 6: 485-503. Kissane DW, Bloch S, Burns WI, et al. Perceptions of family functioning and cancer. Psycho-Oncology 1994; 3: 259-269. Massie MJ, Holland J, Glass E. Delirium in terminally ill cancer patients. Am J Psychiatry 1983; 140: 1048-1050. Endicott J. Measurement of depression in patients with cancer. Cancer 1984; 55: 2243-2248. Kissane DW, Bloch S, Burns WI, et al. Psychosocial morbidity in the families of patients with cancer. Psycho-Oncology 1994; 3: 47-56. Moorey S, Greer S. Psychological therapy for patients with cancer. A new approach. Oxford: Heinemann, 1989. Spiegel D, Bloom JR, Kraemer HC, et al. Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 1989; 1: 888-891. Worden JW. Grief counselling and grief therapy. 2nd ed. New York: Springer, 1991. Fawzy FI, Fawzy NW, Hyun CS, et al. Effects of an early structured psychiatric invention, coping, and affective state on recurrence and survival 6 years later. Arch Gen Psychiatry 1993; 50: 681-689. Greer S, Morris T, Pettingale KW, et al. Psychological response to breast cancer and 15-year outcome. Lancet 1990; 335: 49-50. Mulder CL, Van der Pompe G, Spiegel D, et al. Do psychosocial factors influence the course of breast cancer? A review of recent literature, methodological problems and future directions. Psycho-Oncology 1992; 1: 155-167. ANZ Breast Cancer Trials Group. A randomised trial of post-menopausal patients with advanced breast cancer comparing endocrine and cytotoxic therapy given sequentially or in combination. J Clin Oncol 1982; 4: 186-193. Coates A, Gebski V, Bishop JF, et al. for the ANZ Breast Cancer Trials Group. Improving the quality of life during chemotherapy for advanced breast cancer. A comparison of intermittent and continuous treatment strategies. N Engl J Med 1987; 317: 1490-1495. Coates A, Gebski V, Signorini D, et al. for the ANZ Breast Cancer Trials Group. Prognostic value of quality-of-life scores during chemotherapy for advanced breast cancer. J Clin Oncol 1992; 10: 1833-1838. Price P, Hoskin PJ, Easton D, et al. Prospective randomised trial of single and multifraction radiotherapy schedules in the treatment of painful bony metastases. Radiother Oncol 1986; 6: 247-255. 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. Eisenberg DM, Kessler RC, Foster C, et al. Unconventional medicine in the United States. Prevalence, costs and patterns of use. N Engl J Med 1993; 328: 246-252. World Health Organization. Cancer pain relief. Geneva: WHO, 1986. Further reading and reference material Woodruff R. Palliative medicine. Symptomatic and supportive care for patients with advanced cancer and AIDS. Melbourne: Asperula, 1993. Raphael B. The anatomy of bereavement. A handbook for the caring professions. London: Routledge, 1984, reprinted 1990. Dunlop RJ, Hockley JM. Terminal care support teams. The hospital-hospice interface. Oxford: Oxford University Press, 1990. Buckman R. I don't know what to say. How to help and support someone who is dying. Sydney: Sun, 1990. Derek Doyle. Caring for a dying relative. A guide for families. Oxford: Oxford University Press, 1994. Doyle D, Hanks GWC, Macdonald N, editors. Oxford textbook of palliative medicine. Oxford: Oxford University Press, 1993. Trevelyan J, Booth B. Complementary medicine for nurses, midwives and health visitors. London: Macmillan, 1994. Spiegel D. Living beyond limits. New York: Times Books, 1993. Authors' details Palliative Care Centre, McCulloch House, Monash Medical Centre, Clayton, VIC. Michael A Ashby, FRCR, FRACP, Professor of Palliative Care, Department of Medicine, Monash University. Department of Psychiatry, Monash Medical Centre, Clayton, VIC. David W Kissane, FRACGP, FRANZCP, Senior Staff Specialist, and Senior Lecturer, Department of Psychological Medicine, Monash University. Wesley Medical Centre, Auchenflower, QLD. Geoffrey F Beadle, FRACP, FRACR, Medical Oncologist. William Buckland Radiotherapy Centre, The Alfred Health Care Group, Alfred Hospital, Prahran, VIC. Alan Rodger, FRCS, FRACR, Director and Professor, Department of Radiation Oncology, Monash University. No reprints will be available. Correspondence: Professor M A Ashby, McCulloch House, Monash Medical Centre, Clayton, Vic 3168. 1: Frequency of psychosocial problemsPsychosocial problemsPhase of illnessFrequencyGriefAll phasesUniversalAnxiety disordersMammography1 20%Diagnosis240%Adjuvant therapies233%Recurrence315%Palliative careCommonDepressive disordersMammography5%Diagnosis226%Adjuvant therapies4Minor 20%;major 5%Recurrence315% Palliative care542%Sexual disordersRemission/survival2 38%Family relationship problemsRemission633%Palliative care746% Back to text 2: Themes covered in psychological therapies for patients with breast cancer Multiple losses Death anxiety Fear of recurrence Living with uncertainty Understanding treatment regimens Body and self-image Sexuality Relationships with partner, family and doctors Surgical reconstruction Lifestyle review Future goals Back to text 3: Range of psychosocial supportsPsychotherapeutic techniqueIndicationsEarly stage group therapyGroup therapy is being assessed as an adjuvant to initial medical therapyAdvanced breast cancer group therapyDistress and poor coping; anxiety and depression; routine supportIndividual supportive psychotherapySymptomatic anxiety and depressionFamily therapyFamily distress and poor copingCouple therapyMarital and sexual difficultiesCommunity-based self-help groupsGeneral supportBack to text 4: Useful psychotropic agentsDepressiondothiepin75-300 mg at nightmianserin20-120 mg at nightsertraline50-200 mg dailyparoxetine20-40 mg dailymoclobemide150-900 mg divided into two daily dosesAnxietydiazepam2-40 mg divided into two or three daily dosesclonazepam0.5-8 mg divided into two daily dosesAgitation/deliriumhaloperidol1.5-10 mg divided into two or three daily dosesmidazolam1-5 mg single doses by intravenous injection, as required Back to text 5: Guidelines for selecting systemic treatmentInitial systemic treatmentEndocrine treatmentCytotoxic drug treatmentClinically indolent diseaseAggressive diseaseLong disease-free intervalShort disease-free intervalSlow progressionRapid progressionPositive tumour hormone receptor statusNegative tumour hormone receptor statusLow tumour bulk/few sitesHigh tumour bulk/many sitesSpecial site(s): bone marrow, liver, lung (lymphangitis carcinomatosa)Second and subsequent systemic treatmentsEndocrine treatmentCytotoxic drug treatmentPrior good response to endocrine treatmentProgression after first endocrine treatment requiring more intensive therapy Minimal or no response to previous endocrine treatments Good response to previous cytotoxic drugs Back to text 6: Indications for palliative radiotherapy Locoregional recurrence: ulceration, bleeding supraclavicular or axillary nodes Metastases:bone pain- localised: external beam localised fields- widespread: hemibody irradiationbase of skull/orbital diseaseimpending or pathological fractures- internal fixation and postoperative radiotherapybrain metastasescord compression- surgical decompression and stabilisation rarely indicatedmediastinal nodesBack to text 7: Definition of palliative care Hospice and palliative care is defined as a concept of care which provides coordinated medical, nursing and allied services for people who are terminally ill, delivered where possible in the environment of the person's choice, and which provides physical, psychological, emotional and spiritual support for patients and for patients' families and friends. The provision of hospice and palliative care services includes grief and bereavement support for the family and other carers during the life of the patient, and continuing after death. From: Australian Association for Hospice and Palliative Care Inc. Standards for Hospice and Palliative Care Provision, March 1994. Back to text 8: Clinical and practical issues in planning the palliative care of a person dying at home Pain and symptom control Place of care and death (home, hospice, hospital, nursing home) Role of the team members (who to call for help and when) Aids and equipment Distressing events (expected and unexpected, such as terminal confusion, vomiting or haemorrhage) The actual dying process (explaining to family how death usually occurs) What to do at time of death What to do after death (funeral arrangements, death certificates) Back to text

Michael A Ashby · David W Kissane · Geoffrey F Beadle · Alan Rodger