General medicine

Objectives: To develop an international taxonomy describing errors reported by general practitioners in Australia and five other countries.Design and setting: GPs in Australia, Canada, the Netherlands, New Zealand, the United Kingdom and the United States reported errors in an observational pilot study. Anonymous reports were electronically transferred to a central database. Data were analysed by Australian and international investigators.Participants: Non-randomly selected GPs: 23 in Australia, and between 8 and 20 in the other participating countries.Main outcome measures: Error categories, and consequences.Results: In Australia, 17 doctors reported 134 errors, compared with 301 reports by 63 doctors in the other five countries. The final taxonomy was a five-level system encompassing 171 error types. The first-level classification was "process errors" and "knowledge and skills errors". The proportion of errors in each of these primary groups was similar in Australia (79% process; 21% knowledge and skills) and the other countries (80% process; 20% knowledge and skills). Patient harm was reported in 32% of reports from Australia and 30% from other countries. Participants considered the harm "very serious" in 9% of Australian reports and 3% of other countries' reports.Conclusions: This pilot study indicates that errors are likely to affect primary care patients in similar ways in countries with similar primary healthcare systems. Further comparative studies are required to improve our understanding of general practice error differences between Australia and other countries.

Meredith A B Makeham BMed(Hons), FRACGP · Mary County LLB(Hons) · Michael R Kidd MD, FRACGP · Susan M Dovey MPH, PhD

Objectives: To determine general practitioners' (GPs') attitudes towards and involvement in general practice research.Design: Postal survey and semi-structured interviews conducted from May to September 2001.Participants and setting: 467 of 631 GPs in four Queensland Divisions of General Practice responded to the survey (74% response rate); 18 selected GPs were interviewed.Main outcome measures: Survey — attitudes to research; access to information resources; and involvement in research. Interviews — the need for general practice research; barriers against and factors enabling greater participation in research.Results: 389/463 (84%) GPs, especially younger and more recent graduates, had positive attitudes to research, but only 29% wanted more involvement. 223/462 (48%) were aware they had access to MEDLINE, although presumably all those with Internet access (89%) would have free access via PubMed. Barriers included the general practice environment (especially fee-for-service funding), and the culture of general practice. Enabling factors included academic mentors; opportunities to participate in reputable, established research activities relevant to general practice; and access to information resources.Conclusions: Although Australian general practice has a weak research culture, about a third of GPs would like to increase their involvement in research. However, the research must be perceived as relevant, and structured to minimise the inherent barriers in the environment and culture of general practice.

Deborah A Askew GradDipNutr · Alexandra M Clavarino BA, PhD · Paul P Glasziou MB BS, PhD · Christopher B Del Mar MD, FRACGP, FAFPHM

Widespread availability of quality general practice services is the key to the Australian healthcare system.1 The general practitioner is the gatekeeper. Lack of access to general practitioners flows on to lack of access to specialist and tertiary healthcare, thereby challenging key principles of Medicare such as universality and equity. In the past, adequacy of the general practice workforce was assessed by comparing crude doctor-to-population ratios through time and against other countries, and by assessing utilisation (the number of GP visits per capita per year) against some arbitrarily chosen standard. Neither approach took adequate account of issues such as the differing roles of the GP, availability of alternative primary care services, population demographics or health status of the population. Nor did it take into account maldistributions. This approach was very crude, and it soon became apparent that better methods of assessment were needed. In the 1970s and 1980s, opinion swung between the notion that we had too few medical practitioners,2 and then too many.3 By the mid-1990s, government favoured a restriction on provider numbers and on the entry of overseas-trained doctors. Also, it was no longer assumed that distributional issues could be left to resolve themselves. In the 1992–93 financial year, the Federal Government started spending money on the rural medical workforce problem, introducing the Rural Incentives Program (later constituted as the Rural and Remote General Practice Program, or RRGPP). More recently, in the second half of the 1990s — reinforced by successive Australian Medical Workforce Advisory Committee (AMWAC) reports4,5 — it was the orthodox view that Australia had too many GPs overall, but too few in rural and remote areas, and too few medical specialists. By 1998, AMWAC had undertaken studies covering 50% of the specialist workforce, had reported shortages in most of them, and had recommended increases in training numbers.6 This was despite increasing anecdotal evidence of shortages across the board in the availability of general practice locums and the availability of GPs in outer metropolitan areas. The adequacy (or otherwise) of the medical workforce is not solely a function of the demand for services. There are important supply-side issues, such as lifestyle choices, the feminisation of the medical workforce, and the length of specialist training. As female GPs work fewer lifetime hours, feminisation of the workforce means more doctors are needed for the same total hours of work. These factors affect the required number of medical graduates in order to "produce" the necessary hours of work. However, decisions to increase or decrease medical school intakes do not influence practising doctor numbers for at least a decade. A model developed by Access Economics uses econometric tools to analyse both the supply and demand for GPs.7 With this model, demand for general practice services is shown to be well explained by patient demographics (age and sex both influence demand for general practice services) and socioeconomic factors, together with rurality and remoteness and the price of general practice services. The model also found, as detailed in the Access report, that Australia has a current overall shortage of GPs, and that the shortage is no longer confined to rural and remote regions, but is also increasingly apparent in outer urban areas, often areas of significant socioeconomic disadvantage.7 The report foreshadows that Australia is heading toward GP shortages that would be socially and politically unacceptable. In the early 1970s, Julian Hart, a United Kingdom general practitioner, described the "inverse care law", which essentially states "the availability of good medical care tends to vary inversely with the need for it in the population served".8 Some 30 years later the report by Furler and colleagues in this issue of the Journal (page 80) shows that the inverse care law is still alive and well in general practice consultations in Australia.9 They showed that there is an inverse relationship between the need for longer consultations and the provision of them, thus adding a further dimension — a quality-of-care issue — that was not quantified in the Access model.7 Workforce planning is one of the most difficult areas of public policy. There is no proud record of achievement. As a nation, we have got it wrong more often than we've got it right. Currently, there are skill shortages in many areas of healthcare — nursing, medical technology and radiation therapy, to name just a few. One policy option is to increase public spending on medical education, but there's not much evidence this will be embraced in the near future. The Federal Government is emphasising skilled workers in immigration programs, but many other First World countries are competing with us. We are seeing the emergence of "world markets" for skilled workers, stimulated by the growth of transnational companies and trade in services.10,11 Trade barriers are falling, along with barriers to the international movement of skilled workers. This adds an extra burden to public policy, because actions taken on the other side of the globe will influence the effectiveness of what is done here. If we trained more doctors, would we simply lose them to other countries that can and will pay more? The Federal Government has a very strong influence over doctor numbers. It determines and controls undergraduate places, GP vocational training positions and overseas-trained doctor and temporary-resident doctor intakes. It also shares control with the States over the availability of specialist postgraduate training places through public hospital funding decisions. The government will struggle to solve the problems. To get the "right" number of doctors is hard. To solve the distributional problems is harder still. But get it right we must, especially in light of our ageing population with its burden of chronic illnesses. The equity, access and health-outcome implications of getting it wrong are significant. The profession must also grapple more visibly with the issues and enter the dialogue with a preparedness to engage on a wide range of sometimes controversial issues, including greater use of nurses within practices, differential rebates, and greater use of patient copayments to dampen demand.

John F O'Dea BA · Roger J Kilham BEc

Objective: To compare the rate of provision of longer consultations per head of population across practice locations categorised by socioeconomic status.Design: Retrospective analysis of Medicare data for all consultations for all general practitioners in Australia for the 1998–99 and 1999–2000 financial years, grouped by postcode of practice location. Postcodes were categorised by the Socio-Economic Indexes for Areas, Index of Relative Socio-Economic Disadvantage score.Main outcome measures: Number of consultations and number of brief, standard, long and prolonged consultations per capita in each postcode grouping.Results: The absolute number of long plus prolonged consultations showed no trend across postcode groups, but the rate ratio per person was significantly higher in more advantaged postcode areas. This represents an example of care provision in inverse relationship to need.Discussion: Despite higher rates of chronic disease and lower rates of preventive care uptake, patients in low socioeconomic status areas receive longer GP consultations at a lower rate than patients in more advantaged areas. Possible strategies to overcome this inverse care provision include increased numbers of GPs in disadvantaged communities, removal of financial disincentives to longer consultations, and strengthening health promotion and community health services in disadvantaged areas.

John S Furler MB BS, MRCGP, GDipPubHlth · Patty Chondros BSc(Hons), GDipEpi · Doris Y L Young MB BS, MD, FRACGP · Elizabeth Harris BA, MPH · P Gawaine Powell Davies BA, MHA · Mark F Harris MB BS, DRCOG, FRACGP, MD

Objective: To examine the demographic changes in the cohort of general practitioners servicing residential aged-care facilities (RACFs) from 1984 to 2000.Design: Quantitative analysis of Medicare datasets from 1984 to 2000.Participants and setting: All GPs who provided Medicare-claimed RACF services from 1984 to 2000.Main outcome measures: Aggregate data on RACF GPs by age group and sex; total and average number of RACF services by GP age group and sex.Results: The proportion of RACF GPs younger than 35 years has declined from a peak of 30.2% in 1986 to 11.5% in 2000. GPs aged 45 years and older made up 58.1% of all RACF GPs in 2000, compared with 41.4% in 1984. In 2000, 28.4% of RACF GPs were female, compared with 13.5% in 1984. The proportion of RACF services provided by GPs younger than 35 years fell from 19.2% in 1984 to 4.5% in 2000, and the proportion provided by GPs aged 45 years and older increased from 54.7% to 72.4%. Female GPs' RACF services as a proportion of all RACF services increased from 8.9% to 15.9% between 1984 and 2000, but the average number of RACF services per female GP declined by 15.6 services per year. In contrast, the average number of RACF services per male GP increased by 11.2 per year. The increasing rate of RACF servicing by older GPs is independent of female GPs' declining involvement.Conclusion: Our results suggest an increasing reliance on older, male GPs in the supply of RACF services. Although the proportion of female RACF GPs has increased, average services by these GPs, who are generally younger, has declined. The personal and work preferences of female GPs may have implications for future RACF services supply as older, generally male, GPs retire.

Gregory A Lewis MPubAd, MA(Psychoanalytic studies) · Robert W Pegram MB BS, MHSM

Objective: To identify key issues affecting women general practitioners in their professional and non-professional lives.Design: A qualitative study using the Delphi technique, with three rounds of data provision circulated to each participant. Coding was used to ensure anonymity.Setting and participants: The participants were a purposive sample of 40 women GPs drawn from all Australian States and Territories. The study was conducted between October 1996 and January 1997.Outcome measures: Key issues affecting the professional and non-professional lives of women GPs.Results: Some of the key professional issues for women GPs were job satisfaction, balancing work and personal life, autonomy, availability of flexible and part-time work and training, affordability of professional expenses, fair remuneration, and having a voice in decision-making. Key non-professional issues included self-care; time for relationships with a partner, children, family and friends; and time management to allow pursuit of non-medical interests.Conclusions: The conflicting demands made on women GPs diminish their job satisfaction and lead to stress and imbalance in their lives. Recommendations to ameliorate the problems for women GPs include appropriate training, policy formation, financial and other support, and a change in cultural expectations of women GPs by the community, the profession and governments.

Margaret R Kilmartin MB BS, FRACGP · Christopher J Newell MA, PhD · Martin A Line MSc, PhD

Since 1998, listed public corporations have actively sought to capture a significant proportion of the Australian general practice market. They have paid generously for the "goodwill" of existing practices, entered limited contracts with the doctors in those practices, and relocated some of these doctors to large centres where general practice is linked directly with other diagnostic, imaging and treatment services owned by the corporation. The benefits of these changes for the corporations include assuring referrals to their diagnostic and imaging services (in a competition for market share for these high-cost services), access to private insurance rebates through licensed day-procedure centres, and possible economies of scale. General practice corporatisation and the issues involved have been described elsewhere.1-3 However, the process of general practice corporatisation is maturing, and I would like to discuss some emerging trends and their implications. Emerging trendsThe initial enthusiasm for shares in general practice corporations is waning. Shareholders, institutions and analysts now focus on earnings rather than projections. A collapse in the price of shares in listed general practice corporations in August 2001, followed by a partial recovery, led to a more realistic focus on earnings as a determinant of share price. In addition, the collapse contributed to decisions to terminate practice purchases and to delay public listing by at least one corporation.4 General practice corporations have not shown the same earnings performance as other sectors of the health market, such as private hospital operators. Those owning their own pathology, imaging and specialist services are more profitable than those without vertical integration of referrals. These changes, coupled with recent amendments to the Privacy Act — Privacy Amendment (Private Sector) Act 2000 (Cwlth) — which now require a patient's consent for the transfer of medical records, have caused most general practice corporations to limit new practice purchases, making their initial targets of 50% of the general practice market overly optimistic. Although corporations have a large share of the Perth market (around 40%), it is unlikely they will achieve more than 20% of other metropolitan markets, such as Sydney or Melbourne. Future trends include corporatised practices moving away from bulk-billing of all GPs' services (this has already commenced in some areas of Sydney). Mergers between general practice corporations should further concentrate the market. Other models of general practice integration are emerging, such as general practice market-based cooperatives, where GPs share ownership of diagnostic and therapeutic services and benefit from the profits of those services; Division-based cooperatives;5 and serviced-office arrangements, where GPs collocate, but retain ownership of their own practice (for example, Health Connectiv Pty Ltd). General practice corporatisation and medical ethicsIn the past, some Australian doctors have been induced to act as agents of corporations, not of their patients.6,7 I have previously argued that an informed health consumer relies on the advice and assistance of his or her GP. For the health system to operate as a free market, GPs must act as their patients' agent, not as agents of third parties.3 As there is considerable information asymmetry between health consumers and providers, access to an informed agent or broker, who is free to act solely as a patient's agent in the health system, is a consumer protection issue, not just an issue of professional freedom. This is also the primary principle of medical ethics, which for over 3000 years has required doctors to put their patient's health needs before all other considerations.8 On the other hand, directors of corporations are required to put the needs of shareholders first.9 Meeting the needs of shareholders through customer service is good business practice, but the needs of patients and shareholders will not always coincide. In such a situation, if GPs are not able to put their patient's needs before the needs of the corporation their patients lose. Governments, health consumer representatives, health professionals and managers of health corporations must clearly understand that GPs have a role as honest brokers for their patients in the healthcare system, and must ensure GPs are free to stand up to third parties such as insurers or corporations in the event of competing interests. Governments and general practice corporatisationThe New South Wales Government was the first in Australia to respond to the potential for doctors to experience competing interests. After ministerial inquiries into the provision of male impotency services and the cosmetic surgery industry,6,7 the NSW Government introduced amendments to the Medical Practice Act 1987 (Medical Practice Amendment Act 2000). The Act can now exclude an employer, manager or director from involvement in any company providing medical services if he or she is found to have incited doctors to unsatisfactory professional conduct, or is party to either payment of pecuniary benefits for unnecessary services or directing referrals. Although some States are prepared to act to the extent of their powers to ensure corporations do not influence clinical practice, the Commonwealth Government has encouraged corporatisation of medical practice through its own inertia. It is responsible, through the payment of Medicare rebates by the Health Insurance Commission, for most of the expenditure in this market, where listed corporations are making shareholder profits largely from the public purse. As an example, the Commonwealth Government permits vertically integrated corporations to share profits from internal referrals while continuing to enforce regulations that prohibit the sharing of profits from referrals between traditional practices. The Australian Medical Association and some corporations, with the later involvement of the Royal Australian College of General Practitioners (RACGP) and the federal Minister for Health, developed a Code of Conduct, which was released in October 2001.10 The code was criticised as ineffective at that time.11,12 At 3 June 2002, the code had three signatories. Corporatised practice and health policyThe balance of powerThe prime policy problem is imbalance in the relationship between GPs and their contracting corporation, and the subsequent vulnerability of their patients to exploitation by third parties. As a result of the Australian Competition and Consumer Commission's (ACCC) interpretation of the Trade Practices Act 1974 (Cwlth), the AMA is able to provide professional and legal advice about contract issues to its members, but is prevented from representing individuals or groups of GPs in a contract dispute with a corporation. Leaving aside the possibility that corporate doctors could be deemed to be employees by the Australian Taxation Office, and so become eligible for group representation through a union, GPs under contract are currently sole agents in their relationship with a corporation. Regardless of the details of the contract or the merits of their position, all remedies involve possible civil action. It is unlikely that many individual GPs would take action against a corporation able to defend its position with hundreds of millions of dollars. It would also be difficult for a GP to win a contested case in a civil court against a well funded opponent. An additional inhibiting factor for corporatised GPs is the need to renegotiate a contract with the corporation every four to five years. It is a simple matter for the corporation to refuse to renew a contract, or to make a contract so onerous that a GP would not renew. The doctor is then without a practice or an income source, facing ongoing geographic exclusions from the area of the previous contract, as well as the costs and difficulties of establishing a new practice in another area. Far more subtle, however, is the use of recontracting by corporations to reward profitable or compliant doctors. As more contracts come up for renewal, this is likely to be the most pervasive form of influence corporations exert on GPs. There is an overwhelming argument that it is in the public interest to support organised representation for GPs in contracts with general practice corporations. If the Commonwealth Government, the ACCC and the AMA are unable to provide this, GPs' class actions in civil courts could provide some relief and alter the balance between individual GPs and large corporations. GPs of the future: agents or honest brokers?A policy initiative within the medical profession's grasp is ensuring that GPs clearly understand their ethical responsibilities to their patients, and remain alert to the ways corporations, governments, drug companies and insurers seek to influence them, and so influence the decisions they make on behalf of their patients. This is not a simple matter. The medical profession must also recognise that its actions as a group determine the services and resources available at a population level, while at the same time encouraging doctors to deliver the best possible care for each individual patient. As Australia moves further along the path to "for profit" healthcare, there is a need for greater emphasis on teaching professional ethics in undergraduate, postgraduate and continuing education for general practice. The economics of medical practiceEconomists and governments, under the mistaken belief that primary medical care is not delivered in a competitive market, attempt to apply free-market principles without understanding their effects on the operation of the market and the vulnerability of uninformed consumers in the market. The response to corporatisation of general practice is only one example of government confusion about the components of competition in healthcare, and their need to ensure public protection.3 Other examples include advertising of medical services, the application of the Trade Practices Act to rostering arrangements by medical practitioners, and recent attempts by the Commonwealth Government and insurers to influence the way GPs prescribe or refer their patients. A better-informed economic analysis of the operation of the Australian health system, which includes the opinions of consumers and providers, could assist policymakers to design a health system which follows function, rather than the current design which promotes dysfunction. LegislationFinally, legislation to cover competing interests when doctors refer should not be seen as a remedy for this problem. Attempts in the United States to codify relationships between referring doctors and third parties (the Stark Laws)13 have, for little benefit, increased the clinical and legal complexity of medical practice. These laws were passed in response to widespread public and legislative dissatisfaction about the perceived divided loyalties of US doctors, and the consequent effects on patient care, resulting from longstanding interference by insurers, governments and corporations in the relationship of trust between doctors and their patients. Enforcing the existing prohibition of commercial arrangements between referring doctors, and between doctors and third parties, is preferable to legislating to ensure propriety in arrangements which result from corruption of normal ethical practices. Australians are still in a position to prevent a similar outcome, but the market is operating and time is short.

Paul D Fitzgerald FRACGP, FAFPHM, FAIM

In 1999, the Commonwealth Government introduced the Enhanced Primary Care (EPC) package, aimed at improving preventive healthcare and coordination of care, particularly for elderly people.1 This package comprised a number of elements, including the introduction of new items on the Medical Benefits Schedule (MBS) to enable general practitioners to conduct health assessments (annual assessments of medical health and physical, psychological and social function in elderly patients), care plans (plans to coordinate the care of patients with chronic disease requiring care from multiple providers) and case conferences (see Box 1). Case conferencing was designed to enable GPs to shift from episodic care to providing longer-term care in collaboration with a wider healthcare team. It involves GPs organising or participating in a conference with two or more other healthcare providers. It may be conducted in person or by telephone or videoconferencing. The patient's consent must be obtained, and patients and carers may also be involved. The case conference is a tool for coordinating care across a multidisciplinary team.2 It is used by team members to identify and discuss the care needs and goals of patients with chronic or complex conditions and to assign interventions to particular members of the team.3 Although there is little evidence as yet of their impact on health outcomes, the value of case conferences is that they help ensure that problems are properly identified, care is not duplicated, and errors in communication (which all too often result in adverse events4) are minimised. Case conferences can also serve as a vehicle for education and an opportunity for healthcare providers to get to know each other, thereby building up capacity and strengthening the team approach.5 Those who stand to benefit most from the case-conference approach include patients who have complex problems for which the GP has difficulty finding solutions (eg, patients with stroke or other physical or intellectual disabilities);6 are coping with complex psychosocial problems, such as child abuse;7 have cognitive problems that make them unable to coordinate their own care among providers; require case management across multiple services (eg, those with mental health problems); are managed by telemedicine or by visiting teams in rural areas;8,9 and need coordination of care after being discharged from hospital. There has now been considerable uptake of the health assessments and care-planning items by GPs. However, uptake of the case-conferencing items has been particularly slow, representing less than 3% of total EPC items claimed (see Box 2). In February 2002, there were 577 case conferences in the whole of Australia, compared with 25 787 care plans for the same period. What are the reasons for this? Mitchell et al (page 95)10 detail some of the difficulties GPs experience in fulfilling the requirements for case conferencing. The main problems are logistical ones. The procedures to be followed (including prior patient consent) when initiating case conferences are complex. Even when teleconferencing is used, it is difficult to synchronise times when all participants are available. A single case conference is not enough to build the knowledge and trust required among participants with differing agendas and service orientations, making commitment to participation and joint decision-making difficult. Healthcare workers other than GPs may initiate case conferences. However, the EPC has been a somewhat one-sided development. GPs and private physicians are remunerated for their roles (new physician MBS items were introduced in May 2002), but community and allied health professionals are not. Nor are non-government organisations such as Home and Community Care services or community-controlled Aboriginal health services. Many State-funded health services (such as those for aged or palliative care) are understaffed and find it difficult to engage GPs in their existing case conferences because of conflicting demands on their time. In contrast to case conferences, health assessments require action only by the GP, and much of the work can be done by other healthcare professionals, such as a practice nurse working with the GP. Thus, GPs have been quick to make use of health assessments. The uptake of care-planning items has been slower, but started to take off in the first half of 2001. This was due to various factors: the establishment of education and training programs, the provision of practice support from Divisions of General Practice, and the offer of extra incentives through the Practice Incentives Program. Given the extra organisational complexity of case conferences and the lack of specific support systems to date, it is hardly surprising that uptake by GPs has been low. Continuing with the existing items, using a targeted approach to identify patients who will benefit most (eg, patients with complex psychological or social problems), may be appropriate. However, we should also consider whether the current case-conferencing items are what is really needed. Consultation–liaison (in which a specialist provider provides consultation support to the GP) and case management approaches have been shown to be effective in primary care.11,12 Two separate phone discussions to develop a care plan with two other providers may achieve many of the same objectives as a single case conference. While this may not represent a full "multidisciplinary" approach as envisaged in the EPC package, it does at least work. Such a model should be considered for an EPC rebate as an alternative to the current requirements, which are clearly too difficult. On a more fundamental level, perhaps we first need to devote more time to developing primary care teams within practices and between GPs and local community-based and allied health services.13 Case conferencing not only facilitates integration between health service providers, it depends upon it.14 The difficulties in implementing case conferencing may simply be a demonstration of the lack of effective multidisciplinary education and team building within much of Australian primary care. 1: Requirements for case conferences under the Enhanced Primary Care program* Which patients are eligible? Patients with one or more chronic conditions and multidisciplinary care needs How often can a case conference be held? No more than five times a year, or once for each hospital admission Participants General practitioner and at least two other formal care providers What is involved? Provision of relevant patient history and identification of problems and management issues Setting (or review) of goals and management strategy Evaluation of progress Allocation of tasks to team members Paperwork required List of participants and times the conference commenced and concluded Documentation of problems, goals, and strategies discussed Summary of outcomes (provided to all participants) Obligations to patient Patient must provide informed consent and receive a copy of the summary. *Medical Benefits Schedule book. 1 Nov 1999. Sections A.20, A.21, A.22 (Items 700–773). Canberra: Commonwealth Department of Health and Aged Care, 1999: 32-35. Available at: <http://www.health.gov.au/pubs/mbs>. Accessed 13 June 2002. 2: Claims for enhanced primary care items, by month* *Australian Health Insurance Commission. MBS item statistics reports. Available at <http://www.hic.gov.au/statistics/dyn_mbs/forms/mbs_tab4.shtml>. MBS = Medical Benefits Schedule.

Mark F Harris FRACGP MD

Objectives: To identify general practitioners' views on the barriers to using case conferencing (as outlined in the Medical Benefits Schedule (MBS) Enhanced Primary Care package) and to develop a set of principles to encourage greater GP participation in case conferences.Design: Qualitative study, involving semistructured questions administered to focus groups of GPs, conducted between April and July 2001 as part of a broader study of case coordination in palliative care.Participants: 29 GPs from urban, regional, and rural areas of Queensland.Principal findings: Many of the GPs' work practices militated against participation in traditionally structured case conferences. GPs thought the range of MBS item numbers should be expanded to cover alternative methods of liaison (eg, phone consultations with other service providers). The onerous bureaucratic processes required to claim reimbursement were an additional disincentive.Conclusions: GPs would probably be more likely to participate in case conferences if they were initiated by specialist services and arranged more flexibly to suit GP work schedules.

Geoffrey K Mitchell MB BS, FRACGP · Christopher B Del Mar MD, FRACGP · Alexandra M Clavarino BA, PhD · Inge C de Jong MPsychEd, BSc · Rosemary Kennedy PhD, BA, GradDipSocSc, GradDipTESOL

Objective: To determine whether doctor–patient encounters in general practice with patients from a non-English-speaking background (NESB) differ from encounters with patients of English-speaking background (ESB) in terms of the type of practice where the encounters occur and the type of problems managed.Design and setting: A national cross-sectional survey of GP–patient encounters from a sample of all active registered GPs in Australia.Participants: A random sample of 1047 GPs recruited in the 12 months from April 1999 to March 2000, each providing details of 100 consecutive patient encounters.Main outcome measures: GP demographics, practice characteristics, patient demographics (including whether the patient mainly spoke a language other than English at home), and problems managed at the encounter.Results: After adjusting for significant predictors, encounters with NESB patients were significantly more likely to occur at solo practices than practices of five or more GPs (odds ratio [OR], 2.15; 95% CI, 1.49–3.09), in metropolitan practices (OR, 6.34; 95% CI, 4.04–9.96), and with GPs who mostly consulted in a language other than English (OR, 5.44; 95% CI, 3.78–7.83). NESB encounters were relatively more likely to involve a respiratory problem (OR, 1.14; 95% CI, 1.04–1.26), endocrine/metabolic problem (OR, 1.41; 95% CI, 1.22–1.63) or digestive problem (OR, 1.14; 95% CI, 1.02–1.27), and relatively less likely to involve a psychological problem (OR, 0.73; 95% CI, 0.61–0.88) or social problem (OR, 0.67; 95% CI, 0.49–0.92).Conclusion: Differences in morbidity management rates between encounters with NESB patients and ESB patients may reflect both differences in underlying prevalences of some disorders in the population of general practice patients, as well as different reasons among the two groups for attending general practice.

Stephanie A Knox BSc, BA (Hons) · Helena Britt BA, PhD

Alcohol is probably one of humanity's oldest drugs, and is the most widely used drug in the Australian community.1 In this issue of the Journal (page 103), the article by Graham and colleagues, on newer pharmacotherapies to help people with alcohol dependence,2 highlights specific interventions that general practitioners can use to help their patients with more severe alcohol-related problems. It is worth noting that most of the morbidity associated with alcohol use does not occur in people with dependence, but rather in those who have hazardous or harmful drinking patterns. The National Mental Health and Wellbeing Survey indicated that, among young men aged 18–24 years, the prevalence of harmful use of, or dependence on, alcohol was over 20%.3 The 1998 National Household Drug Survey found that 18% of people surveyed admitted to driving, 30% admitted to verbally abusing another person, and 2% admitted to physically assaulting another person while under the influence of alcohol.1 The acute health and social effects of alcohol intoxication are just as devastating as the long-term effects of chronically excessive alcohol consumption. Many GPs have negative perceptions of dealing with people who have alcohol and other drug-related problems.4 However, GPs can be very effective at altering the consumption habits of non-dependent drinkers.5 If the matter is raised, most Australians who drink too much will respond to a structured discussion with their GP about their alcohol consumption patterns. This may be where the general practice "main game" ought to be. The first step in managing people with alcohol-related problems is to identify them, and currently the AUDIT questionnaire is accepted as the most appropriate screening tool in the general practice setting.6 A copy can be found in the recent Guidelines for preventive activities in general practice.7 Screening of all Australians over the age of 15 is recommended. Brief intervention — the steps Identify individuals in whom alcohol consumption is hazardous or harmful Determine the person's readiness for change If contemplating change, discuss the benefits of reducing drinking Suggest strategies for reducing consumption Negotiate goals Arrange follow-up Brief intervention (see the Box) involves GPs raising the question of alcohol intake, and determining whether patients might consider changing their levels of consumption. If so, then risks and benefits of drinking are explored, strategies for reducing alcohol intake to safer levels are presented, goals are set, and follow-up is arranged. If patients do not wish to discuss their drinking, they can be given some printed information and the door left open for them to return if they change their minds. The intervention is quick and easily learnt. Many Divisions of General Practice across Australia offer training in brief intervention and motivational interviewing. GPs can also help their patients overcome alcohol dependence, but interventions for this require more time. Detoxification in the community, supervised by GPs, can be a safe option,8 and rural GPs supervise hospital-based detoxification on a regular basis. The use of anti-relapse medications such as acamprosate or naltrexone can help alcohol-dependent patients remain abstinent once they have undergone detoxification. However, as such patients ideally require counselling and support from professionals specifically trained in addiction, the GP's role is as a member of a team. The medication is only part of the assistance package. It should also be remembered that screening and therapeutic interventions for alcohol problems are just one of many competing demands on GPs. High blood pressure; diabetes; smoking; screening for breast, cervical and colorectal cancer; depression; domestic violence; falls — the list of competing preventive priorities seems endless. Where should alcohol fit into all of this? What are the opportunity costs? What are the workforce ramifications of these types of preventive activities? Is there spare capacity within general practice to address these tasks? Clinical practice guidelines and recommendations about preventive activities are positive developments in themselves, but are rarely accompanied by any consideration of whether they are possible to implement on a broad and equitable basis. Despite significant philosophical shifts within general practice and a growing acceptance of the value of prevention, the dominant medical model remains diagnosis and treatment. This pervades the way that general practice functions, the way it is structured and the way it is remunerated. In a recent survey of general practice in 2000–2001,9 alcohol-related activities did not rate in the "top 30" most frequently managed problems. This reflects a reality that most health bureaucrats are reluctant to acknowledge — what is being asked of general practice is often beyond its capacity to provide. The GP is stuck in the middle, trying to respond to the community demand for diagnosis and treatment, while at the same time being asked to do more and more on a preventive level. The pertinent question as to whether the (usually population health) problem is best tackled through the medical model is almost never asked. There are often other approaches to these issues that are more effective, but might be politically unpalatable. In the case of alcohol misuse, reducing access though higher levels of taxation (resulting in a higher price), targeting public education campaigns, restricting advertising, random breath testing and increasing penalties for drink driving are all effective methods of reducing alcohol-related morbidity and mortality. In short, alcohol consumption is best addressed by public policy. General practice needs to focus on what it does best: diagnose and treat. There will be some circumscribed areas of prevention where the medical model fits well or where it is an important part of the whole picture. If we decide that alcohol consumption is one such area, then general practice needs to be adequately resourced to undertake this new task. However, there will be opportunity costs. There is good evidence that we can have a positive impact on alcohol consumption patterns, but we currently do not focus on this area in a substantial way because of real competing priorities that our community has placed before us.

Chris Holmwood MB BS(Hons), MClinEd, FRACGP, DipRACOG

"Hey doc, whaddaya reckon? Is this sore infected? Do I need antibiotics? Mind if I walk with you?" So starts my clinical day as I walk from my parked car and potential patients fall in for street therapy. An informal consultation frequently ensues. Street drug users are in a hurry. Appointments and time management have no place in their chaotic lives. Setting aside time to see a doctor is well down the list of priorities. Most are in an endless rotating door — scamming at least a hundred dollars a day for heroin is the main game. Informal street consults are the way I dispense medical advice to this marginalised group. Most have no GP and have never sat in a waiting room; nor are they likely to. Time is precious as they push the limits of endurance to survive on the streets. Tolerating this exotic clinical behaviour has given me access to an unusual underclass of patients who rarely see doctors at all. I treat drug dependence within general practice in Kings Cross in Sydney. It is a magnet to drug users and is the epicentre of street drug culture in Australia — users flock here from all over the country. But first let me tell you what it is that makes the Cross different from anywhere else in Australia. Demographically, Kings Cross is a village perched on a hill between Rushcutters Bay and Woolloomooloo with the highest population density in Australia. Few of its denizens travel by car, and so the streets are always full of people at all hours of the day and night. From its halcyon days as a place where actors, artists and writers lived to now, when drug users rub shoulders with yuppie designers, journalists and movie makers, the Cross has seen more than its share of eccentric and odd behaviour, holding, as it does, an edgy juxtaposition of the marginalised with the mainstream. If nothing else, the Cross and its habitués are tolerant of extreme diversity. My practice is unique in that around half of my patients are injecting drug users. By the time they make it into treatment, a large proportion have depleted their finances and their health. Wasted, demoralised, often with criminal charges for break-and-enter or stealing hovering over their heads and the prospect of a jail sentence awaiting them, they attend my rooms. Their recent history is littered with failed attempts at home detoxification or geographical relocation to beat the heroin habit. Desperate family members will drag them in, trying to coerce them into treatment. This is rarely successful. Untreated serious infections are commonplace. Hepatitis C, chronic airways limitation, psychiatric comorbidity and serious injuries complicate their initial presentation. For them, I facilitate treatment with pharmacotherapies like methadone, buprenorphine and naltrexone. These treatments fit well into a primary care setting, allowing users a window of sobriety, a chance to "chill out" and reassess their lives. However, none of these treatments is a panacea. Many will start treatment only to fall out and resume again at another time. Others manage to stick it out, putting up with the rigour of attending treatment centres to requalify as functioning members of society. There is a clear correlation between staying in treatment and improved outcomes in this population. But, for me, the most important thing is to establish a therapeutic alliance with these once-feral individuals — no matter how tenuous this may appear — and slowly, over time, to observe the re-integration of personality and lost talent. For many have rare gifts and capacities that have fallen into disuse over years of addiction. This process is among the most gratifying experiences in medicine that I can think of. A psychiatrist once told me that treating addiction was the most difficult area of medicine to work in. I should adjust my expectations down from what I had been used to. In treating drug dependence, "there is no such thing as failure, just varying degrees of success", he said. This adage has stuck with me over the years. It really means that any engagement with a drug user is a success of sorts, and that to keep them in treatment, even for a few weeks, may give them that glimmer of hope to revisit treatment options in the future. In the past year I have had referrals from the nearby Medically Supervised Injection Centre. Some of these clients had never considered treatment as an option, but have had some gentle counselling in the "chill out room" after they have used their drug of choice. If they have experienced overdoses, there is some urgency in commencing treatment and I try to minimise the bureaucracy involved in providing them with a substitution treatment. My guess is that my street consultations while I walk to coffee, lunch or back to my car in the evening will continue. Sometimes I will examine an abscess under a street light, listen to a wheeze on Darlinghurst Road and maybe get asked if I want to buy some marijuana by the 15-year-old kids who sell the stuff on the streets every night. "Sorry doc, I didn't recognise you for a moment."

Raymond C Seidler MB BS

For both human and systemic reasons, there is a chronic shortage of general surgical and obstetric–gynaecological specialists in some parts of rural and remote Australia. There is also a shortage of other specialists (eg, ENT, urology, and plastic surgery) in some regional centres. Additionally, many rural towns with one surgeon have a workload that would support two, and some two-surgeon towns could sustain more. The Royal Australasian College of Surgeons (RACS) and most State health departments have a policy of, or preference for, at least two surgeons in appropriate towns with populations and resources to warrant these services.1 This allows manageable "on call" hours, safe-hours work practice and professional support. Most of the major remote centres in Australia have two resident general surgeons or one surgeon with backup and support (or relief) from an appropriate regional or metropolitan centre. These surgeons may not always be Australian-trained, but they play an important role in "areas of need". These days, for mainly social and family reasons, surgeons may not spend their entire professional life in these towns, so an ongoing supply of trained replacement surgeons is needed.2 The RACS Rural Surgical Training Programme, which has now been functioning for four years, is starting to fulfil this need, providing up to 10 appropriately trained surgeons to go into rural practice each year. Logistically, or for geographic reasons, some remote and rural towns will continue to rely on GPs for "on the ground" initial assessment and management of patients with surgical problems. Optimally, this occurs not in isolation, but with professional support from the regional surgeons to whom these GPs refer, and with the backup of regularly provided outreach specialist services.3 As a generation of broadly trained older and experienced GPs approach retirement, there is an obvious need for suitably trained replacement GPs. The Advanced Surgical Skills Training Programme for Rural GPs is a joint initiative of RACS, the Royal Australian College of General Practitioners (RACGP) and the Australian College of Rural and Remote Medicine (ACRRM). Unfortunately, this program has foundered because of the tardiness of implementing more decentralised training schemes under the auspices of the RACGP and the ACRRM, but it is hoped that it will be re-introduced soon. Intensive training courses provided by various State Rural Medical Support Agencies into all aspects of emergency medicine (including surgery, obstetrics and ophthalmology) provide some level of appropriate training and capability for GPs going to rural and remote areas (and those already there) (for example, the Queensland Rural Medical Support Agency).4 These courses are important and not universally known about. But does the chronic under-resourcing of rural surgeons and the geographic location of GPs influence surgical referral patterns? This interesting question is addressed in this issue of the Journal by Gruen and colleagues (page 111).5 Their findings, based on data accrued by the Bettering the Evaluation and Care of Health (BEACH) program, suggest that rural and remote GPs without resident surgical services refer patients at about the same rate as their regional and metropolitan colleagues. However, these GPs manage more obstetric and ophthalmological patients locally. This probably reflects their training and expertise made necessary by their geographic isolation. However, many rural and remote towns in Australia have regular surgical services (from weekly to quarterly) provided by outreach services from regional and metropolitan centres, and these services may not be reflected in the BEACH data. Many Australian rural and remote hospitals now have tele-conferencing, telemedicine and satellite communication facilities. These are used particularly for educational purposes, but also increasingly for clinical applications. They are not usually available at short notice or for 24 hours a day, which limits their use for acute surgery and obstetrics. The telephone remains the communication medium of choice. Telephone support is particularly valuable for GPs if the specialist at the other end has an ongoing relationship with and a knowledge of the capabilities of the facility, and the expertise available in the rural or remote town. A variety of models and methods will continue to be needed to provide specialist surgeons to all the centres that need them: The Flying Surgical Service in Queensland (based in Roma and Mt Isa) provides outreach services to many Queensland country towns; The University of Adelaide Department of Surgery provides a rotating specialist surgeon to Port Augusta; The University of Western Australia outreach program provides a cost-effective service to many small rural towns;3 and The New South Wales Department of Health is trialling a "mobile surgical bus" fully equipped to provide specialist surgical services (particularly elective services in ENT, urology and ophthalmology) to rural centres in New South Wales where these surgeons or the facilities required are not otherwise available. It is vital that any outreach service does not lead to de-skilling of rural GPs (or general surgeons), but rather is an enhancing, educational experience. Despite advances and improvements in the availability of aeromedical evacuation services, many rural and remote parts of Australia will continue to need appropriately trained and supported rural GPs to provide acute surgical care. These GPs will know when it is best to refer on to larger centres. These larger centres will continue to need professional onsite specialist services, staffed by local surgeons, with appropriate financial resources to provide their rural or remote general practice colleagues with ongoing support and advice.

Anthony J Green

Objective: To determine the effect of proximity of surgical specialists on general practitioners' (GPs') rates of referral of surgical problems to specialist care (ie, are surgical referral rates of GPs in rural or remote areas similar to those of GPs in urban centres?).Design: A cross-sectional survey of GP–patient encounters.Setting: The Bettering the Evaluation and Care of Health (BEACH) program, which involves all active registered GPs in Australia.Participants: A random sample of 3030 GPs, each providing details of 100 consecutive patient encounters.Main outcome measures: Proportion of surgical problems (including ophthalmological and obstetric and gynaecological) referred to surgical specialists (surgeons' rooms, hospital outpatient departments or hospital emergency departments).Results: Absence of a local specialist did not significantly influence the proportion of surgical problems referred by GPs overall, but the proportion referred was significantly lower for obstetric (odds ratio [OR], 0.56; 95% CI, 0.44–0.70) and ophthalmological (OR, 0.60; 95% CI, 0.49–0.73) problems. Other factors independently associated with referral of a lower proportion of problems included male GPs, female and younger patients, holders of a Health Care Card, injury-related and non-cancer-related problems, follow-up presentations, and more than one problem managed at an encounter.Conclusions: Our findings confirm that rural and remote GPs undertake much of their patients' antenatal care, and are less likely to use specialists when managing ophthalmological problems. Absence of local specialists in other surgical specialties is not a barrier to referral of patients with surgical disorders.

Russell L Gruen MB BS, DipEpidBiostat · Ross S Bailie MB ChB, MD(Community Health), FAFPHM · Stephanie Knox BSc, BA(Hons) · Helena Britt BA, PhD

South Bank Medical Centre York, UK I needed a change and I got one — more than one, in fact. In July 2000, I resigned as a general practitioner in York, England, to become GP Educator at the Centre for Remote Health in Alice Springs. My remit includes training medical students and GP registrars, and providing professional development for GPs and other health professionals. I do a clinical session at the Aboriginal Medical Service and another in private practice. Squirrels and oak trees have been exchanged for parrots in the pawpaw tree outside my kitchen window. What has it been like? What changes have I encountered, and what cultural adjustments were required? With more "foreigners" being enticed to the bush, my experience may be of interest to those who follow and to those who work with them. The most obvious change is the interaction with Aboriginal culture. It was also a change I expected, as did colleagues, who helped me along, recommending books1 and arranging cultural awareness courses. But to this was added the cultural shift from city to remote area, from clinical service to academic medicine, from England to Australia, and from a National Health Service to private practice. Each change has had its own challenges and rewards. Centre for Remote Health, Alice Springs Remote practiceThe prospect of medical practice in a remote area was frightening. I observed the debate between the Royal Australian College of General Practitioners and the Australian College of Rural and Remote Medicine about the nature of rural and remote practice and wondered how I would cope. In reality, Alice is a regional centre, and I have better access to help than I did in urban York, where patients sometimes waited a year to see specialists. Relationships with patients and communication skills remain the cornerstone of practice. Where I have needed skills retraining has been in aspects of practice that, in England, are performed by practice nurses, such as Pap smears and ear syringing. Although the principles of medicine are similar, some of the practice is inevitably different. Service delivery in private practice is less cohesive than in England, where the registered list system encourages continuity of care and work within multidisciplinary teams. Conversely, the absence of the responsibility brought by the list system means that "extra" patients at the end of the day are seen by choice rather than contractual obligation. Indigenous healthThe high morbidity and mortality among Indigenous Australians is well documented, but the suffering behind those statistics jolts into reality when patients younger than myself shuffle in with the after-effects of a stroke or are semi-incarcerated by renal dialysis. Because of the high incidence of rheumatic fever, practising evidence-based medicine requires that sore throats are treated with penicillin, not just analgesics. Without a first language or health beliefs shared between patients and staff, achieving a common understanding of a problem and its appropriate management takes time. Teamwork between staff of different professions and cultures is essential to reduce "non-compliance" caused by misunderstandings and unallayed fear.2 Academic practiceI often wondered about a career in academic general practice. It would capitalise on my love of books and teaching, as well as my experience of different practices acquired during my husband's ophthalmology rotations. In addition, coursework on organisational change and medical sociology for a Master's degree in primary healthcare was invaluable preparation, revealing that values, behaviours and ideologies are culturally transmitted and relative.3 The good side of academic life is the flexibility and ability to work at home if children are ill; the downside is the halving of income. It took time to escape from the habit of 10-minute consultations and the expectation that colleagues "book with my receptionist". Just as the pressures of academic life are less visible, so are the rewards — the results of teaching may never be seen, while research projects take an age. As a clinician, I believe a patient's story unless compelling contrary evidence forces me not to. The world of medical politics, into which academics are unwittingly propelled, requires a more circumspect approach. Grant applications, teaching schedules and research reports have replaced insurance forms and prescription requests as the bottomless pit of paperwork in my life. Life in AliceMy neighbour on a flight to Sydney asked what it was like living in a remote place. Despite my previous concerns, I struggled to understand the question. I could think only of the privilege of working and living in a friendly community. It takes no more than five minutes to get anywhere, the tourism industry supports a wide range of facilities, and the weather is fantastic. In cities, I now find it stressful working out how to cross the road — it is much easier just to wander over when no "utes" or four-wheel-drives can be heard. BureaucracyThe hardest struggle has been to navigate the path to obtaining registration and visas. Is it a deliberate ploy to enlist human psychology — to inspire doctors to want what they cannot have? The declared need for doctors in rural and remote areas is not matched by Commonwealth action or policy towards overseas doctors. Our visas arrived three weeks before our departure — six months after the application was submitted. As "temporary residents", we had difficulty getting a mortgage, yet buying a house seemed a logical way of ensuring a commitment to the area. While I appreciate the need to maintain standards, I have only just gained conditional registration to work as a GP in the Northern Territory. A letter from the medical board previously advised me either to pass the Australian Medical Council examination or to enter a recognised training program, despite my having an FRACGP. I replied that it was difficult to enter a training program that I had been appointed to assist in running! Surviving and thrivingHow have I survived? Flights, family, friends, faith, keeping fit and the phone, plus knowing my limits and previous experience of work in a cross-cultural environment. We miss friends and extended family, but this also happened in England, as the hours of work and commuting reduced life to a subsistence sandwich of work, shop, eat, sleep and more work. Email, videos and a family website of our latest camping exploits help us keep in touch. The community in Alice has been welcoming and supportive, and the fundamentals of my life have not altered. I am still married with two children and regularly attend church. The children have had their ups and downs but hope that we will be allowed to stay. Knowing one's personal limits seems important for survival. My limit was a desk of my own, and when space became short I offered to bring my tent to work. In the end, it was not needed, but a place to work was an essential anchor. Others will have different needs, which may sound equally odd or difficult. Try to provide the luxury that will keep your colleagues sane. So, if you need a change, it can be done, and life can be richer for it. If not, enjoy your situation, and ensure that you perceive that life is greener on your own side of the fence.

Susan M Wearne MMedSc, FRACGP

It is February 2005. A bus crawls down the hill into Teepokana (a small fictional town on the west coast of Tasmania) and grinds to a halt near the harbour. Arash stares out of the window. On one side, all he can see is the great Southern Ocean. On the other is a colourful row of shops, cafes and houses nestling under the steep hillside. As a final-year medical student, Arash is just starting his three-week rural general practice placement, at a rather unusual practice. The old blue four-wheel-drive is waiting, just as Fiona, his preceptor, had told him it would be. Fiona is sitting on the tailgate tapping away on her laptop and intermittently sipping a cappuccino. After a friendly welcome, Arash is soon bouncing along the gravel road that leads out of town. He has never driven a "cruiser" before. Meanwhile, Fiona is catching up on a few review consultations, juggling her laptop and mobile phone with admirable dexterity. "Here they are," she says, pointing at the screen, "Mrs Mansell's TFT results. She'll need to up her thyroxine a bit, I reckon". Arash looks puzzled. "All our pathology results come direct to the Multipurpose Centre's secure server. I can access new results remotely and then transfer them to her records. They're also web-based." A quick phone call to Mrs Mansell, and the plan is made. "See. I can do a script from my laptop that'll go direct to the pharmacy by email, and her medication will be dropped off by the postman first thing tomorrow. And here's the appointments page. I've got her booked in to recheck her TFTs." Arash slows down as he pulls into a small settlement some 30 minutes' drive south of Teepokana. Fiona is just finishing her sixth review over the phone. "It's made a big difference now that rural doctors can claim through the MBS [Medical Benefits Schedule] for telephone consultations," she says. "Now, this is Spero Bay. Only 400 or so people live here permanently. It's mostly the copper mine and a bit of tourism that keeps this place alive. One of us comes down once a fortnight and we hold a surgery in the community hall." Half an hour later and Arash is stuck. He has 40-year-old Bill Hodgson to see. Bill is worried about heart disease, because his workmate has just had a heart attack, and he thinks he should have his cholesterol checked and get some treatment. It is all very well knowing risk factors for heart disease, but Arash is struggling to answer some of Bill's questions. He turns to Fiona. "Don't worry, you can't carry this stuff in your head. Now here's the practice home page," she says, turning the laptop's screen so that Bill can look as well. "Click on 'consultation tools' . . . there it is . . . 'New Zealand Risk Tables'.1" Arash is soon able to help Bill understand things more clearly. "So, your overall risk of having heart trouble in the next five years is between 2.5% and 5%. That's pretty low, isn't it? But if you could stop smoking then you'd halve your chances of getting heart disease." Guided by Fiona, Arash "clicks" a few more times and prints out some information for Bill from the Quit campaign2 and National Heart Foundation3 websites. Fiona suggests that Bill contact Aaron, the nurse practitioner, if he wants to give up smoking. "Aaron's great", says Fiona as they drive back later that morning. "He does some sessions to relieve Linda, our regular community nurse, and also runs our respiratory and diabetes clinics. He's really good at the educational side of things. It makes a real difference to managing chronic disease. He works from sets of guidelines that we developed. In fact, our income through the Practice Incentive Program has meant we can pay for an endocrinologist and optometrist to visit annually." Arash looks puzzled again. "But how can Aaron work in the surgery and in the community, and why would you use your own income to pay for visiting services?" Fiona smiles. "We solved quite a few problems like that when we took the plunge 18 months ago. Our municipality became the first fundholding demonstration site. Essentially, we set up a service company that takes an annual lump sum from State Health and all our Medicare and PIP [Practice Incentive Program] income. In fact, every dollar we can grab from grants, university teaching appointments or whatever goes into one pot. The service company is overseen by a local board of directors, with both professional and consumer representation. So both Aaron and I are employed locally. We do quite nicely out of this arrangement, so we can just get on with planning and delivering services as best fits our skills without worrying about income or bureaucracy or traditional professional roles. "It's certainly not an easy way to go. The local community has had a hard time deciding priorities out of the limited bucket of money. But the important thing is that it is their decisions and their priorities, not some bureaucrat's. They really own their health service." Arash is feeling a bit numb as he walks into the Multi-purpose Centre. It seems he is going to need a heap of skills to be a doctor that he is not learning at medical school. Still pensive, he follows Fiona into the videoconferencing room next to the office. "This should be a good session for you to join", she says, as a group of eight students appears on the large screen in front of them. "These students are all in final year and come from Medicine, Nursing and Pharmacy. We have integrated skills teaching with all three schools early on in their courses and then a series of integrated sessions throughout the course. Today, we're doing some problem-based stuff on chronic disease. We'll focus on multidisciplinary team work. We're using the videoconferencing equipment much more for clinical applications as well, particularly for psychiatry. We've got so few psychiatrists in this State — most of our referrals go to Brisbane now. It works very well." After lunch, Fiona flicks through her emails. There is one from Oliver, an exploration geologist who spends a good deal of time overseas. His asthma often worsens in hot humid climates and today, in Brazil, it is doing so again. Fiona opens his web-based record and finds the page with his asthma management plan to jog her memory. Oliver has entered a few peak flow readings over the past few days for Fiona to look at and informed her that he has doubled his inhaled steroids. He is really wanting some reassurance. Fiona enters a few comments in his notes and then emails him back. She also has an email from Marjory. "Marjory's a poor soul really, but much better than she was a year or so ago. For the last few years, she's had a worsening combination of agoraphobia and panic disorder. She was taking up a lot of our time in house calls as she wouldn't leave home. And, worse, we weren't even helping her. Last summer, her grandchildren visited, got her hooked up to the Internet and bought her a small webcam for her computer. She had a few sessions of CBT [cognitive–behavioural therapy] with a psychologist using videoconferencing and has been using some Internet-based self-guided CBT. She's even had exposure therapy for her agoraphobia using virtual reality. Linda and I started taking turns to see her face-to-face once a month and would hook up with the videoconferencing in between. It was quite amazing — she actually started doing her hair and make-up for these sessions. She came to the surgery to see me last week for the first time in three years." Fiona points to another email. "I'll sort this one out tonight", she says. "I do some charity work with some doctors in Nepal. I get one or two referrals a week for second opinions. They'll email me the history and any x-rays or things and any questions. If I don't know something, I can more easily find out than they can." Arash has his thinking cap on by now. "How do you manage to keep up to date with everything?" Fiona smiles. "You can't, so I don't really try. Look, it's a question of redefining education and what it means and how we use it. And that's where all our fancy IT [information technology] really helps. I can't predict who is going to walk through the door tomorrow, so how do I know what to learn about? And what I learnt at the last evening meeting might be old hat by the time I need it anyway. We use 'just in time' education, and it's revolutionised the way I manage my patients. Our practice homepage links to websites like the BMJ's "Clinical Evidence" site4 and the National Electronic Library of Health in the UK.5 I usually get the answers I want quite quickly. Sometimes, we'll look for things during the consultation. If I can't get what I want in 30 seconds, I'll chase it up later. Sometimes, my patients will find the answers for me. It's sort of healthcare homework, I suppose. The practice provides an up-to-date list of reliable websites, and I just help patients work through it all. This way we get the answers to the questions we've got, as and when we need them." Fiona clicks again on her laptop. "What's all that about?" asks Arash. "Up the top is the height of the ocean swell, and at the bottom are the local tide tables. Which means we've done enough work for one day. It's time to go surfing."

Edi Albert MSc FRACGP

Objective: To evaluate adherence to an agreed minimum dataset for patient medication information exchange between hospitals and general practitioners.Design: Quasi pre–post design with a supplementary post-program comparison group; sequential descriptive surveys of patients following recent discharge from public hospitals; opinion questionnaire for key hospital informants; stakeholder forum to review data and Quality Use of Medicines (QUM) action plans between pre- and post-program surveys.Participants and setting: GPs and hospitals from the South East Area Health Service, Sydney. During 2000–2001, 81/124 GPs (65%) returned 147 patient questionnaires in initial follow-up; 88/119 GPs (74%) returned 131 questionnaires in final follow-up; a supplementary group of 54/120 GPs (45%) returned 66 questionnaires; 32/45 (71%) of nominated key informants responded to the hospital survey.Results: Direct notification of GPs by hospitals of their patient's admission was unchanged from the initial level of 22%. The proportion of GPs providing medication information to the hospital increased from 38% to 51% at Stage 2 (P < 0.05) and remained at 52% at Stage 3. The proportion of GPs receiving discharge summaries directly (initially 2%) increased to 26% at Stage 2 (P < 0.001) and remained at 27% at Stage 3.Conclusions: System change is slow to occur, but changes that are implemented are maintained. The stakeholder forum suggested that a specific person should be responsible for GP liaison.

Andrea Mant MD, MA · Nicole L Cockayne BSc(Hons) · Linda Kehoe MSc · Karen I Kaye BPharm, DipHospPharm · Wendy C Rotem MA, MHA

To the Editor: The ME/Chronic Fatigue Syndrome Association of Australia Limited. has expressed its concern over the content of the Royal Australasian College of Physicians' clinical practice guidelines on chronic fatigue syndrome, published as a recent supplement to the Journal.1 Recognising a shared objective to overcome the challenges of chronic fatigue syndrome (CFS), neither the Association nor the College believes that conflict will provide a useful path to future answers. Accordingly, as the Chairman of the ME/Chronic Fatigue Syndrome Association of Australia and the President (at the time the guidelines were published) of the Royal Australasian College of Physicians, we would like to document the common ground we have identified. We acknowledge, as do the guidelines, that CFS is a serious, disabling illness. There is no evidence that the illness is primarily psychological in origin. There is significant evidence of a range of biological abnormalities occurring in people with CFS. It remains unclear whether these are primary or secondary. Treatment should be personalised according to the symptoms and circumstances of the individual patient. Treatment plans should be worked out by the patient together with a healthcare professional and designed to be within the capabilities of the patient. Scientific evidence on aetiology, pathophysiology and treatment is, at this stage, grossly deficient. More research is required to understand the biological mechanisms involved and to clarify the role that genetic, environmental and infectious agents might have in the aetiology and pathophysiology of this complex and debilitating illness. The medical community, other health professionals and patients and their families should work together to encourage increased funding and research into the epidemiology, aetiology and pathophysiology of CFS so that we may find more effective treatments for this condition (or these conditions). All clinical guidelines should be viewed as documents that will, in time, require refinement, rewriting and replacement. Doctors must be cognisant of the limitations of all such guidelines and be aware that the investigation and management of a patient's condition must be determined with the assistance of the best and latest information as it emerges and, in all instances, be tailored to the needs of the individual patient.

Richard G Larkins · Simon R Molesworth

The United Kingdom National Health Service (NHS) has experienced 10 years of primary care budget holding in a variety of forms. Half of all general practitioners had joined the GP fundholding scheme by 1997, and many others had joined broader GP commissioning groups, but fundholders controlled only about 20% of the budget for hospital and community health services. Research on fundholding and commissioning groups suggests that delegation of budgets produced some gains in the range and effectiveness of services, but also had significant management costs and inequities. From 1999, all primary care professionals joined Primary Care Groups, which are now becoming Primary Care Trusts (PCTs). PCTs will control three-quarters of the healthcare budget and provide all primary and community services as well as commissioning hospital care. Control of a unified healthcare budget presents opportunities to improve quality, increase integration of services, reduce inequities and improve health. However, PCTs are threatened by a growing gap between capacity and expectations, and by continuing tension between devolution of power and increasingly prescriptive management by central government.

David Wilkin MSc, PhD

Australia needs a distinctive “rural health” approach that recognises the valuable role played by the “outback” in our economy and our national psyche The year 2002, the "Year of the Outback", is an opportune time to reflect on why rural health matters and why it continues to be important for Australia. It is the culmination of a decade of initiatives and activity by governments, health organisations and communities seeking to address the "problem of rural health". Rural health emerged in the 1990s as an identifiable field of activity focusing on improving the health status and meeting the specific health needs of people living "out back" of metropolitan areas. The key rural health issues are medical workforce supply, including appropriate training and education; transport and access to appropriate services; funding and costs to patients; and the health status of Aboriginal and Torres Strait Islander peoples in particular, which remains a national shame.1 Under strong pressure from the rural electorate and from advocacy bodies such as the National Rural Health Alliance, there has been a positive government response to rural health issues in recent years. This has included a policy framework that coordinates different levels of government;2 support for advocacy groups and rural professional associations; a significant investment in rural and remote academic infrastructure through the university departments of rural health and rural clinical schools;3 and increased funding for regional and Aboriginal health services. As it is too early to fully evaluate the outcomes of Commonwealth investment in rural health, a sustained effort is required. Rural health issues warrant specific and ongoing attention for a number of reasons. Firstly, outback Australia is different from metropolitan Australia. While the defining characteristic of rural health remains its geography (and related issues of access to healthcare services), rural and remote Australia is also sociologically, culturally, economically and spiritually different from metropolitan areas, as well as internally diverse. It is these characteristics that define the health behaviour of its residents, determine their health status and influence the way health and medical care is provided.4 Nowhere is this more evident than in dealing with the healthcare needs of Aboriginal and Torres Strait Islander peoples in rural and remote regions. Secondly, rural health matters because of health differentials between the city and the outback. Nationally, there is a trend towards a higher mortality rate with increasing remoteness, mostly attributable to the higher proportion of Aboriginal and Torres Strait Islander peoples in remote and very remote regions.5 Given the right of all Australians to optimal health and equitable access to health services, the significantly poorer health status of people in outback Australia remains a fundamental concern. Thirdly, improving rural health is integral to rural and regional development in Australia. Currently, outback Australia fares worst in statistical comparisons of the underlying social determinants of health — namely, housing, employment, income level, education, transport, and social security.6 Good health does not result from access to health services alone. Without a comprehensive regional development policy that focuses on a healthy rural economy, many outback communities face a bleak future — a future characterised by continued poor health status of rural dwellers. Complementary local initiatives based on community empowerment will also be required to address specific problems. Lastly, rural health matters because of the valuable lessons to be learned from the many innovative solutions that have arisen in response to the problems of rural health in Australia. The tyranny of distance, the deficit of resources and the passion of a number of dedicated practitioners to cater for the diverse geographical circumstances of non-metropolitan Australia have resulted in many innovative health sector responses, including the Royal Flying Doctor Service, multipurpose and regional health service models, and telemedicine. Nurse practitioners (a concept currently being trialled in several States) have been working effectively in Australia's remote communities for decades. Australia is a world leader in rural health education, particularly medical education.7,8 Implementation of a true primary health care approach has long characterised the way healthcare is practised and delivered in many small outback communities, particularly by Aboriginal community controlled health services.9 In summary, innovation born of both local need and community action is a hallmark of much rural and remote healthcare practice. Strong rural and regional representation in setting national policy is imperative. Moreover, improved coordination between government departments and between different levels of government on issues affecting rural areas is required. Metropolitan-based clinicians, educators, policymakers and those responsible for implementing health programs should at the very least have an awareness of the geographical, economic and cultural diversity of their constituents and patients. We in the medical profession can collectively continue to press for appropriate health infrastructure, improved access to education and economic opportunities for rural and remote communities. The issue of how the "outback" is defined (whether in terms of "rural" or "remote" areas) is likely to be an ongoing debate, if for no other reason than its significance in terms of resource allocation and monitoring of health outcomes. What should not be in dispute, however, is the need for a distinctive "rural health" approach and national recognition of the valuable role in the Australian economy and psyche played by a healthy "outback" in all its diversity.

John Wakerman MTH, FAFPHM, FACRRM · John S Humphreys BA(Hons), DipEd, PhD

Objectives: To ascertain which factors are most significant in a general practitioner's decision to stay in rural practice and whether these retention factors vary in importance according to the geographical location of the practice and GP characteristics.Design: National questionnaire survey. The method of paired comparisons was used to describe the relative importance of the retention items.Setting: Non-metropolitan Australia, September 2001.Participants: A stratified sample of all rural GPs practising during April–June 2001.Main outcome measures: A rank ordering of factors influencing how long GPs stay in rural practice, and an index of their relative perceived importance.Results: Professional considerations — overwhelmingly, on-call arrangements — are the most important factors determining GP retention in rural and remote areas. Rural doctors consistently ranked on-call arrangements, professional support and variety of rural practice as the top three issues, followed by local availability of services and geographical attractiveness. Proximity to a city or large regional centre was the least important factor. Retention factors varied according to geographical location and GPs' age, sex, family status, length of time in the practice, and hospital duties.Conclusions: A broad, integrated rural retention strategy is required to address on-call arrangements, provide professional support and ensure adequate time off for continuing medical education and recreation.

John S Humphreys BA(Hons), PhD · Judith A Jones BA(Hons), MSPD · Michael P Jones BSc(Hons), PhD · Paul R Mara DipRACOG, FRACGP, FACRRM

General practitioners are usually the first point of contact for people with depressive illnesses. Their ongoing support, encouragement and, most importantly, provision of appropriate information is critical to the management of these illnesses. Patients generally respect and trust their doctor and will be guided by the GP's advice. Information is empowering. It allows people to make informed choices about their treatment and care. Initially, a patient suffering from a depressive illness may only need, or want, basic information about their illness. However, over time, the provision of more specific and detailed information for both the sufferer and his or her family is desired and appropriate. Unfortunately, doctors often assume that patients know more than they do about their illness. However, lack of knowledge about where to look, the stigma associated with depressive illnesses and the belief that they can somehow "pull themselves together" may dissuade many people with depression from directly asking the GP for information. Even the most proactive patients can become disheartened at the lack of general information about depressive illnesses available to the community. GPs have taken on the role of information providers, but now need to see this role in broader terms. Consumers and carers want information in the form of handouts, lists of appropriate books and articles, website addresses, support group details and other available resources. It is also important that the information presented to patients is relevant, easy to read, written for the target audience and not biased. The Internet is extremely useful for accessing relevant information, but it is also a source of inappropriate information. Anyone can be an author about depressive illnesses on the Internet, writing only from their own point of view. For example, in a search on antidepressants, I found a website condemning their use, based only on the experiences of the writer.1 This sort of (mis)information can be confusing to patients and their families. Therefore, gentle guidance of patients to appropriate websites, in addition to other sources of appropriate information, is crucial. The information in this supplement will help GPs and other healthcare professionals in this task.

Lara M Bishop

Membership of the Working Group Convenors Dr Robert Loblay, PhD, FRACP, Immunologist, Department of Medicine, University of Sydney (Convenor); Royal Australasian College of Physicians. Associate Professor Graeme Stewart, PhD, FRACP, Immunologist, Westmead Hospital (Co-convenor); Royal Australasian College of Physicians; Former member, Ministerial CFS Review Committee. Members Dr James Bertouch, MD, FRACP, Rheumatologist, Prince of Wales Hospital, Sydney; nominated by Australian Rheumatology Association. Associate Professor Peter Cistulli, PhD, FRACP, Respiratory Physician, Department of Respiratory Medicine & Sleep Disorders Centre, St George Hospital; nominated by the Australasian Sleep Association. Dr Paul Darveniza, MD, FRACP, Neurologist, St Vincent's Hospital Sydney; nominated by the Australian Association of Neurologists. Mr Craig Ellis, BA, BSW(Hons), Member, ME/CFS Society of Victoria; nominated as a Consumers' Health Forum of Australia Inc. representative. Professor Paul Gatenby, FRACP, FRCPA, Immunologist, The Canberra Hospital; nominated by the Australian Rheumatology Association. Dr David Gillis, FRACP, FRCPA, Immunologist, Institute of Medical and Veterinary Science, Adelaide; nominated by the Australasian Society of Clinical Immunology and Allergy. Professor Ian Hickie, MD, FRANZCP, Psychiatrist, Department of Community Psychiatry, University of New South Wales; nominated by the Royal Australian and New Zealand College of Psychiatrists. Associate Professor Andrew Lloyd, MD, FRACP, Infectious Diseases Physician, School of Medical Sciences, University of New South Wales; nominated by the Australasian Society for Infectious Diseases. Dr Bryce Phillips, MB BS, General Practitioner, Melbourne; former member, Ministerial CFS Review Committee. Professor Wai-On Phoon, FRACP, FAFOM(Hon), Occupational Medicine Physician, Centre for Occupational and Environmental Health, University of Sydney; nominated by the Australasian Faculty of Occupational Medicine. Dr Katherine Rowe, MD, FRACP, Paediatrician, Royal Children's Hospital (Melbourne); nominated by the Paediatrics & Child Health Division, Royal Australasian College of Physicians. Dr Ian Steven, MD, FRACGP, General Practitioner; nominated by the Royal Australian College of General Practitioners. Professor Denis Wakefield, MD, FRACP, Immunologist, School of Medical Sciences, University of New South Wales; nominated by the Royal College of Pathologists of Australia. Dr David O Watson, MB BS, FRACP, Consultant Physician, St John of God Health Care WA; former Chairman, Ministerial CFS Review Committee; nominated by the Royal Australasian College of Physicians. Project Officer Ms Victoria Toulkidis, BA(Comm), DipPubHlth, Senior Policy Officer, Royal Australasian College of Physicians. Preface These guidelines are primarily aimed at assisting general practitioners, but they are also relevant to specialist physicians and other healthcare professionals involved in managing people with fatigue states, including physiotherapists, occupational therapists, psychologists and social workers. They are based on information available at the date of publication, and are intended to provide a general guide to best practice. However, it should be emphasised that evidence-based clinical practice involves not only use of the best available research evidence, but also exercise of the practitioner's clinical judgement, taking account of individual patient preferences. Background In 1990, the Royal Australasian College of Physicians (RACP) published a brief position paper on the investigation and management of chronic fatigue syndrome (CFS) in the RACP magazine, Fellowship Affairs. In 1993, as a result of perceived variations in clinical practice, the then Commonwealth Minister for Health (Senator Graham Richardson) established a CFS Review Committee (comprising Dr David Watson [general physician], Dr Bryce Phillips [general practitioner] and Associate Professor Graeme Stewart [clinical immunologist]) to make recommendations on "diagnostic and management regimens that the medical profession would regard as appropriate for sufferers of CFS". The Review Committee approached the RACP for an up-to-date position, and the College passed the request to the Australasian Society of Clinical Immunology and Allergy (ASCIA). In 1994, a fully revised discussion paper prepared by ASCIA1 was circulated to all specialist physicians in Fellowship Affairs, together with a questionnaire, and the paper and survey results were subsequently made available to the Ministerial Review Committee. In 1995, as a result of the Review Committee's recommendations, the Commonwealth Department of Health funded the Royal Australian College of General Practitioners to conduct a survey of general practitioners' opinions and practices in relation to CFS. The Ministerial Review Committee also recommended the production of consensus guidelines for distribution to all medical practitioners in Australia. Fortuitously, in October 1995, the National Health and Medical Research Council (NHMRC) published Guidelines for the development and implementation of clinical practice guidelines,2 which provided an ideal framework for this purpose. Consequently, in 1996, a multidisciplinary Working Group (including a Consumer Health Forum representative) was established under the auspices of the RACP to develop and disseminate evidence-based guidelines, following the procedures recommended by the NHMRC. The Commonwealth Department of Health and Family Services provided funding. A: Quality-of-evidence ratings I: Consistent evidence obtained from more than two independent, randomised and controlled studies or from two independent, population-based epidemiological studies. Studies included here are characterised by sufficient statistical power, rigorous methods and inclusion of representative patient samples. Alternatively, a meta-analysis of smaller, well-characterised studies may support key findings. II: Consistent evidence from two randomised controlled studies from independent centres, a single multicentre randomised controlled study or a population-based epidemiological study. Data included here have sufficient statistical power, rigorous methods and the inclusion of representative patient samples. III-1: Consistent evidence obtained from two or more well-designed and controlled studies performed by a single research group. III-2: Consistent evidence obtained from more than one study, but where such studies have methodological constraints, such as limited statistical power, or the inclusion of patient samples which may be non-representative. III-3: Evidence obtained from a single case-control study or a selected cohort study. III-4: Conflicting evidence obtained from two or more well-designed and controlled studies. IV: Consensus opinions of respected authorities, based on clinical experience and/or descriptive reports. Guideline development The Working Group conducted an extensive review of the relevant scientific literature on prolonged fatigue, chronic fatigue and CFS, and the evidence was rated according to a modification of the schema recommended by the NHMRC. In addition, the Ministerial Review Committee report and a variety of other local and international public domain documents were examined. Submissions were invited from interested practitioners, consumers and patient support groups. Eighty submissions were received from people with CFS, carers, concerned individuals and CFS Societies. The Consumer Health Forum representative produced two documents: A compilation of submissions made by people with chronic fatigue syndrome and others to the Royal Australasian College of Physicians for the investigation of chronic fatigue and management of chronic fatigue syndrome clinical practice guidelines,3 and A CFS health consumer perspective.4 Quotations for the perspective boxes in these guidelines were drawn from these documents. The working group prepared draft guidelines that were widely circulated in early 1998. Comments were sought from relevant specialist societies, Royal Colleges, the National Health and Medical Research Council, patient support groups, complementary practitioner associations, and interested individual practitioners and consumers. The draft was also made available on the MJA website <http://www.mja.com.au/public/guides/cfs/cfs1.html>. The draft guidelines attracted widespread comment both as a result of the initial public consultation and over the four years that they remained available on the MJA website. They were subsequently extensively revised and updated, and underwent a limited second round of public consultation. This final version of the guidelines is the result of revisions carried out in the light of comments received. Literature review and evidence ratings The evidence contained within published studies was evaluated according to the process outlined in the NHMRC Guidelines for the development and implementation of clinical practice guidelines (see Box A).2 The quality-of-evidence ratings were modified to provide an integrated system for evaluating diagnostic, epidemiological and pathophysiological studies, as well as treatment trials. Studies were rated primarily according to the rigour of the research methods used. However, since the interpretation of individual studies is often constrained by selection and other biases, replication across different studies performed in independent research centres was considered a key factor in assessing the reliability of evidence. When the available evidence from several well-conducted studies on a particular topic was conflicting, the quality-of-evidence ranking indicated this uncertainty (Level III-4). Level IV evidence represents consensus opinions of experts, including working group members, based on clinical experience and limited scientific data. Although such statements may inform current practice, they should be interpreted cautiously, as they may undergo future modification in the light of new evidence. Clinical Overview "To study the phenomena of disease without books is to sail an uncharted sea, while to study books without patients is not to go to sea at all."5 Fatigue can be defined as a pervasive sense of tiredness or lack of energy that is not related exclusively to exertion. It is a common complaint in the community and is usually transitory. If fatigue is prolonged beyond six months, is disabling, and is accompanied by other characteristic constitutional and neuropsychiatric symptoms, then a diagnosis of chronic fatigue syndrome (CFS) should be considered. What is CFS? "CFS" is a descriptive term used to define a recognisable pattern of symptoms that cannot be attributed to any alternative condition. The symptoms are currently believed to be the result of disturbed brain function, but the underlying pathophysiology is not known. Therefore, CFS cannot be defined as a specific "disease" entity at present. Indeed, there is growing evidence that the disorder is heterogeneous, and it will probably prove to have no single or simple aetiology. It is important for practitioners to appreciate the distinction between disease, illness and disability. Diseases are defined and categorised according to our contemporary understanding of causal mechanisms and pathophysiology. As new knowledge emerges, disease definitions and terminology change. Illness, by contrast, is the subjective experience of suffering and, as such, can only be defined by reference to the sick person. Disability is the functional impairment - physical, psychological and social - caused by disease and illness. Even though an underlying disease process cannot presently be defined in patients with CFS, the suffering and disability caused by the illness can be very considerable - in many cases comparable to that seen in multiple sclerosis and rheumatoid arthritis. It is therefore important that doctors acknowledge the reality and seriousness of the suffering and disability experienced by people with CFS. Our goal as physicians is not only to identify and treat disease, but also to help relieve suffering and disability, whatever the cause. Diagnosis CFS is diagnosed on clinical grounds. It relies on the presence of characteristic symptoms (see Box B), and the exclusion of alternative medical and psychiatric diagnoses. In individual patients, the symptoms of CFS may overlap with other common syndromes such as fibromyalgia and irritable-bowel syndrome, and the primary diagnosis will depend on which symptoms are the most dominant and disabling. People with CFS often have concurrent depression, and this need not exclude the diagnosis. As similar symptoms can also occur in a range of other disorders (eg, thyroid disease, anaemia, major depression), the first priority in clinical assessment is to exclude alternative explanations. This can be achieved by careful history-taking, physical examination and a restricted set of laboratory investigations. B: Diagnostic criteria for chronic fatigue syndrome6 1. Fatigue Clinically evaluated, unexplained, persistent or relapsing fatigue persistent for six months or more, that: is of new or definite onset; is not the result of ongoing exertion; is not substantially alleviated by rest; results in substantial reduction in previous levels of occupational, educational, social or personal activities; and 2. Other symptoms Four or more of the following symptoms that are concurrent, persistent for six months or more and which did not predate the fatigue: Impaired short term memory or concentration Sore throat Tender cervical or axillary lymph nodes Muscle pain Multi-joint pain without arthritis Headaches of a new type, pattern, or severity Unrefreshing sleep Post-exertional malaise lasting more than 24 hours Clinical history It is important to take careful note of the character of the fatigue. In people with CFS, fatigue is typically exacerbated by relatively minor physical or mental activity, and is associated with a protracted recovery period lasting hours or days. The fatigue should be differentiated specifically from weakness (neuromuscular disease), dyspnoea and effort intolerance (cardiac or respiratory disease), somnolence (primary sleep disorders), and loss of motivation and pleasure (major depression). Additional clues which could point to alternative diagnoses include unexplained weight loss (occult infection, malignancy, thyrotoxicosis, Crohn's disease); dry skin and cold intolerance (hypothyroidism); snoring and daytime sleepiness (sleep apnoea); risk factors for transmission of blood-borne infections (HIV, hepatitis C); prior episodes of depression or anxiety (vulnerability to psychiatric disorder); arthralgia or rash (connective tissue disease); and prescribed or illicit drug misuse. A history of altered bowel habit may indicate an underlying gastrointestinal infection (eg, giardiasis), coeliac disease, thyroid disease, or inflammatory bowel disease. Examination Characteristically, there are no abnormal physical findings in people with CFS. The physical examination and mental state examination are therefore primarily directed towards excluding other disorders. A careful assessment for neurological deficits or signs of anaemia, cardiac failure, respiratory disease, hidden infection, connective tissue disease or tumour should be conducted. The presence of persistent fever, lymphadenopathy, or enlargement of the liver or spleen are not features of CFS and always warrant further investigation. The behavioural signs of psychiatric disorder should also be sought, including psychomotor slowing (major depression), physiological arousal (anxiety states and panic disorder) and cognitive deficits (delirium or dementia). Investigation There are currently no validated laboratory tests to confirm the diagnosis of CFS, assess its severity or monitor progress. Hence, the purpose of laboratory investigation is to help exclude other disorders. Recommended screening investigations are: full blood count and erythrocyte sedimentation rate; serum electrolyte, calcium and creatinine levels; biochemical liver function tests; thyroid function tests (TSH); and urinalysis for blood, protein and glucose. Additional investigations should be ordered only if the history or examination plausibly suggests other diagnoses (eg, autoimmune connective tissue disease, coeliac disease), or if abnormalities are found in the screening investigations. Routine analysis of immune function (lymphocyte subsets, immunoglobulin levels), infectious disease serology, or environmental toxins are not recommended. Unvalidated diagnostic tests should only be performed in the context of an appropriately designed and ethically approved clinical trial. Specialist referral In most cases, a general practitioner should be able to diagnose CFS. However, if, after a careful history, examination and screening investigations, the diagnosis remains uncertain, the opinion of a specialist physician, adolescent physician or paediatrician should be sought. Referral to a psychiatrist may also be useful for people with profound or prolonged depression or anxiety states. Specialist referral may also help in formulating an appropriate management plan (see below). Management In the early stages reassurance and supportive care is generally all that is required, as most prolonged fatigue states will resolve spontaneously. In people with established CFS, providing a definite diagnosis, along with general information about the illness and its natural history, are important starting points for good clinical care. A definitive diagnosis also serves to validate the patient's experience of illness and suffering. Doctors who display empathy, acceptance of their patient's suffering, a non-judgemental style and a commitment to continued care are likely to establish a beneficial therapeutic relationship. Conversely, doctors who reject or trivialise the patient's illness experience are likely to promote feelings of alienation and to perpetuate ill health. In managing people with CFS it is important to: develop an individualised management plan for physical and social rehabilitation; discourage excessive rest and minimise social isolation; maintain regular contact; evaluate the basis of any new symptom or deterioration in function; and provide support for the person and his or her family, including access to social security, educational assistance and disability services where appropriate. To date, no pharmacological agent has been reliably shown to be effective treatment for CFS. Management strategies are therefore primarily directed at relief of symptoms (eg, headache, muscle pain) and minimising impediments to recovery (loss of functional capacity, disruption of the sleep-wake cycle, intercurrent depression and social isolation). Additional elements of good clinical management are the development of a clear and mutual understanding of the nature of the illness; a sensible approach to physical and mental activity; and realistic expectations about long-term outcome possibilities. Understanding the illness Helping people with CFS understand the nature of their illness is an important element of good clinical management. For example, some people harbour fears that an occult infection, environmental pollutants or electromagnetic fields may be causing irreversible neurological or immunological damage. Others may have been led to believe that any physical activity at all could be harmful. Unwarranted concerns of this kind may lead to maladaptive attitudes and behaviours that may increase disability and retard recovery. Doctors should also avoid simplistic attributions of CFS to "chronic infection", "immune dysfunction", "malingering", or "mere depression". Instead, it should be recognised that the illness is likely to be multifactorial in origin. A broad perspective that encompasses medical, psychological, and social aspects is more appropriate. Physical activity In general, people with CFS should be encouraged to undertake physical and intellectual tasks, starting at a level that is tolerated without significant exacerbation of symptoms. This should initially be in divided sessions of relatively short duration. As exercise tolerance improves, duration and intensity of activity can be gradually increased. Graded exercise programs have been shown to be beneficial for some people with CFS, and can improve functional status. It is important to discuss with the patient the vicious circle whereby initial avoidance of physical activity may lead to longer-term avoidance of all activity. In the early stages of the illness, many people with CFS put off chores or social engagements until they feel better, then push themselves excessively on "good days" to make up for lost time. The subsequent worsening of symptoms and delayed recovery can establish a cyclic pattern of illness and disability. An individualised management program should be carefully negotiated between the patient and doctor, with particular attention to: starting at a level of activity that can be achieved without exacerbation of symptoms - abrupt resumption of strenuous activity after prolonged periods of inactivity should be discouraged; undertaking activity on a regular basis, with sessions of limited duration; and planning for regular reviews to achieve feasible increases in activity over a realistic time-frame (eg, several months). In formulating a management plan, it is important to be aware that in many people with CFS the degree of fatigue can fluctuate unpredictably from day to day and week to week. Flexibility in the level of physical and mental activity undertaken to allow for such fluctuations ("pacing") should be explicitly discussed. Sleep Unrefreshing sleep is extremely common in people with CFS. Patients usually report a longer time to fall asleep, an increased time in bed awake, and a broken and restless sleep pattern. A shift from regular night-time sleep to daytime naps and a late-night to late-morning sleep cycle is sometimes noted. It is known that chronic disruption of the normal sleep pattern can induce symptoms in healthy volunteers, including fatigue, musculoskeletal pains, irritability and impairment of concentration. The general goals of sleep management are to establish a regular, unbroken, night-time sleep pattern and to improve perceptions of the quality of sleep. Although direct evidence of benefit in CFS is currently lacking, the following strategies may be helpful: establishing a regular bed-time routine - going to bed when "sleepy" rather than "tired"; putting the light out immediately rather than reading or watching television in bed; and "anchoring" the sleep routine by setting the alarm to the same rising time every day; judicious use of sedative-hypnotic medication to achieve sleep; use of analgesics and non-steroidal anti-inflammatory drugs (NSAIDs) for relief of musculoskeletal pain; avoiding (preferably) daytime naps or keeping them under 30 minutes; gentle exercise during the day (within the limits of the individual's functional capacity). Where appropriate, the advice of a specialist sleep physician should be sought, either to exclude a primary sleep disorder or to manage the sleep disturbance. Sleep hygiene strategies can also be incorporated into a "cognitive behaviour" therapy program (see Chapter 3). Clinical experience suggests that sleep interventions in people with CFS may reduce symptoms and improve functional capacity, although direct evidence for this is lacking. Symptomatic drug treatment No medication has yet been shown to provide long term remission or "cure" in people with CFS. However, there is a place for symptomatic treatment for relief of specific symptoms if they are sufficiently distressing. As such treatments for CFS are empirical, each patient should be monitored carefully to ensure that the symptomatic benefits outweigh any side effects. Many people with CFS report an increased susceptibility to drug side effects, and it is advisable to begin with small doses when introducing new agents. Although depression is a common symptom in people with CFS, the disorder as a whole cannot be regarded simply as a "somatised" variant of a depressive illness. Overall, clinical trials of antidepressant drugs show no consistent pattern of improvement. However, judicious use of particular agents may provide symptomatic improvement in subjective energy (moclobemide), sleep disturbance (amitryptyline, nefazodone), muscle and joint pain (amitryptyline), and depressed mood (sertraline, paroxetine, nefazodone). A reasonable approach is to consider undertaking an "N = 1" therapeutic trial of a selected drug based on this broad pattern of effects on brain function. Given that these drug therapies are increasingly varied and complex, there is an important role for the specialist physician or psychiatrist to guide the choice of drugs and their monitoring. In people with the overlapping syndrome of fibromyalgia, the use of symptomatic treatments such as analgesics and NSAIDs, in combination with tricyclic agents, can be effective in reducing pain and improving sleep. Psychological and social support As with other chronic illnesses, managing people with CFS requires consideration of the psychological and social impacts of the illness. People with CFS may be unable to continue full-time work, so financial difficulties may rapidly develop. Similarly, CFS frequently disrupts high school or university studies. Successful return to work or school after a prolonged illness with CFS often requires a rehabilitation program incorporating medical treatments, psychological support and occupational therapy. Doctors may need to coordinate the help of other healthcare and educational professionals to implement this. The impact of the illness on the person's family should also be considered. In some circumstances it may be useful for people with CFS to bring their spouse or partner to a consultation, both to help them better understand the illness and to discuss their difficulties in coping. Parents of children and adolescents with CFS should be seen regularly, and may require additional support and counselling. Doctors should be prepared to act as advocates for their patients in negotiations with employers, educational institutions and social welfare organisations. For instance, part-time work or school alternatives may need to be arranged, or disability allowances may need to be sought. Joining a patient support group may be valuable for some people. CFS societies can offer individual and group support, education, and advice about access to social welfare agencies (Box C). Individuals may also benefit from the opportunity to exchange information on how to cope with the many practical day-to-day difficulties that arise for those living with this debilitating condition. However, the quality of advice given can vary and it is therefore useful for the doctor to have ongoing knowledge of the activities and attitudes of local support groups. C: Support and resources for people with CFS14 CFS = chronic fatigue syndrome; HACC = home and community care. Special considerations in children and adolescents Children and adolescents are in a dynamic developmental state, and issues such as self-concept, autonomy, body image, socialisation, sexuality and academic goals are of central importance. Early intervention in those with persistent fatigue is therefore especially important. For this reason, many experts believe that in children and adolescents a diagnosis of CFS should be considered when unexplained fatigue persists for three months, rather than the six months stipulated in the adult case definition. The family practitioner or paediatrician should seek the cooperation of the parents and other carers in devising a supportive rehabilitation plan. Information should be provided to young people, their family and teachers to help them gain an appropriate understanding of the illness, and in some cases visiting the school and talking to classmates might be helpful. Although there is considerable variation, prognosis in children and adolescents is better than in adults, with recovery likely to occur within two to four years. An individualised plan should be developed over the week for: maintenance of peer contact and relationships with friends; academic and recreational activity; and physical activity, rest periods and sleep. Adjustments to schooling may involve limiting the number of subjects taken, or the number of days per week at school (particularly if travel to and from school is causing exhaustion). Occasionally, a mixture of distance education and school attendance for one or more subjects allows both social contact and maintenance of academic progress. Those in Years 11 and 12 who are hoping to qualify for university entrance may need to apply for special consideration, and consider a 12-month extension. Appropriate psychosocial support throughout the illness is particularly important. Prolonged absence from school may lead to anxiety about falling behind with classwork, and young people may become frustrated and depressed by their inability to participate in sporting and social activities. These issues should be discussed explicitly. Psychiatric labelling is generally unhelpful. In most cases, there is little evidence that the disorder is "psychosomatic", and inappropriate speculation about "school phobia" may be damaging and counterproductive. Early correction of such misunderstandings leads to fewer difficulties in the long-term. Those at the more severe end of the disability spectrum may require a more intensive, multidisciplinary approach to rehabilitation and psychosocial support. Where there are obvious behavioural problems or major disturbances in family functioning, the assistance of a child psychologist or psychiatrist may be of value. 1: What is chronic fatigue syndrome? Epidemiology Prolonged fatigue is common in primary care, with a prevalence of 10%-25% (Level I). The prevalence of CFS in the community is 0.2%-0.7% (Level III-2), and 0.5%-2.5% in primary care (Level I). CFS predominantly affects young adults (Level I). CFS occurs in individuals from all socioeconomic groups (Level I). For an explanation of the rating of levels of evidence, see page S21. Natural history Most fatigue syndromes are of short duration and resolve spontaneously (Level II). People with CFS for more than five years tend to remain symptomatic, although function may improve slowly over time (Level II). People meeting diagnostic criteria for CFS rarely develop another medical condition that explains their symptoms, but are at increased risk of developing psychological disorders (Level II). Concurrent psychological disorder, somatic symptoms, high levels of fatigue and a low sense of control over symptoms are associated with poorer outcomes (Level II). A supportive doctor-patient relationship is an important component of managing people with CFS (Level III-3). For an explanation of the rating of levels of evidence, see page S21. Prolonged and disabling fatigue is present in 10%-25% of patients presenting to general practitioners.7-13 Fatigue syndromes lie along a continuum of severity,8,14-16 from ubiquitous transient and mild states to the more severe and prolonged fatigue disorders, including CFS.17-19 As with many other problems in clinical medicine (such as blood pressure and body weight), the challenge is to identify the point at which the problem becomes clinically significant. In relation to fatigue states, it is important to focus on those in whom the disorder is associated with ongoing disability20,21 and significant social or economic cost.22 Diagnostic criteria In 1988, the United States Centers for Disease Control proposed the term "chronic fatigue syndrome" to describe a clinical condition defined by a cluster of constitutional and neuropsychiatric symptoms occurring in a distinctive pattern.23 Current diagnostic criteria (see Box B) describe CFS as a syndrome of physical and mental fatigue, usually of acute onset, which is markedly exacerbated by physical activity. Other common symptoms include headaches, myalgia, arthralgia, and post-exertional malaise; cognitive difficulties, with impaired memory and concentration; unrefreshing sleep; and mood changes.16,24-27 The diagnostic criteria also require that the person must have been ill for more than six months and that the symptom complex is associated with substantial disability. Delineating CFS as a clinical syndrome has facilitated descriptive clinical research to test the validity of the concept, epidemiological studies to document prevalence and to formulate aetiological hypotheses, laboratory studies to test hypotheses about underlying pathophysiology, and research into a range of treatment strategies.28,29 Although a variety of research definitions have been proposed,6,23,24,27,30-33 the current international consensus criteria for CFS6 have gained wide acceptance in the scientific literature.34,35 In routine clinical practice, a diagnosis of CFS may be appropriate even though the requirement of four out of eight additional symptoms is not formally met (see Box B). Such patients (with "idiopathic chronic fatigue"6) can have comparable levels of disability,27 and may also benefit from the assessment and intervention strategies described in these guidelines. In primary care, up to two-thirds of people presenting with persistent fatigue have some other identifiable medical or psychiatric disorder that accounts for the symptom,36-41 and careful assessment to exclude these is essential before making a diagnosis of CFS.6 "Disease" or "illness"? Syndromal diagnoses like CFS have a long history of use in clinical medicine.42 In the absence of a clear understanding of the underlying pathophysiology, CFS is best regarded as an "illness" - a subjective state that can only be defined by reference to the sick individual - rather than a "disease".43-45 "Disability" arises when illness interferes with the individual's ability to function normally. People with CFS are clearly ill, and are often significantly disabled, even though an underlying disease process has not yet been identified.46 What other terms are commonly used for CFS? In the United Kingdom the earlier term "myalgic encephalomyelitis" ("ME")47 is still in use, and in the United States the term "chronic fatigue and immune dysfunction syndrome" (CFIDS) is in widespread popular use. Both names inappropriately suggest that the cause or mechanism of illness is understood (inflammation of the brain, spinal cord and muscles; or immune deficiency). Most research groups prefer the term "CFS", as it leaves open the question of aetiology and pathogenesis.6,23 Neurasthenia (literally meaning "nervous exhaustion") is a diagnosis included in the International classification of diseases (ICD-10) to describe a syndrome of mental and physical fatigue of at least three months' duration. The term has a long tradition of use in psychiatric classification,48 but the extent of its overlap with CFS, and with common psychological disorders such as anxiety and depression, remains to be determined.49 Although patients are rarely labelled as having neurasthenia in Australia, the UK or the US, the diagnostic term is widely used in Europe and elsewhere. Neurasthenia has a prevalence of 5.4% (range, 2%-10%) in primary care settings worldwide.50 How common is CFS? The reported prevalence estimates of CFS differ as a consequence of variations in sampling methods, survey instruments and diagnostic criteria, particularly with regard to duration of illness and the extent to which alternative medical and psychiatric diagnoses were excluded (Box 1.1). Early attempts to record the community prevalence suggested a range of 0.002% to 0.04%.30,55,56 These figures appear to be substantial underestimates as a consequence of limitations in sampling or diagnostic protocols. The true prevalence of CFS can only be determined in large-scale community studies employing adequate case detection and characterisation techniques. In the US and UK, four studies have provided a more realistic estimate of 0.2% to 0.7% (that is, 200-700 cases per 100 000 people).39,40,57,58 In Japan, the community prevalence has been reported to be 1.5%.59 In primary care settings, estimates of the prevalence of CFS are between 0.5% and 2.5%, depending on the intensity of medical, psychiatric and laboratory evaluation (Box 1.1). Preliminary estimates of the incidence of new cases per year of prolonged fatigue or chronic fatigue in primary care are 3%-5%,40,60,61 whereas the incidence of CFS is about 0.4%.40 1.1: The prevalence of fatigue states Prevalence of prolonged fatigue (PF), chronic fatigue (CF) and chronic fatigue syndrome (CFS) in primary care Study PF CF CFS Buchwald et al, 1987, USA51 - 21% - Kroenke et al, 1988, USA7 23.8% - - David et al, 1990, UK8 10.5% - 0.16% Cathebras et al, 1992, Canada9 13.6% 5.7% - Bates 1993, USA52 - 27% 0.3%-1.3% Katerndahl 1993, USA10 6.9% - - McDonald et al, 1993, UK53 - 112% 2.5% Walker et al, 1993, USA11 6.7% - - Pawlikowska et al, 1994, UK15 - 18.3% - Buchwald et al, 1995, USA39 - 19% 0.1%-0.3% Hickie et al 1996, Australia13 25% - 0.3%-1.3% Wessely et al 1997, UK54 - 11.3% 0.5%-2.6% Who is at risk of CFS? CFS predominantly affects young adults, with a peak age of onset between 20 and 40 years.30,40,57,62 In samples of patients from treatment centres, CFS appears to be more common in women (typically in a ratio of 2-3:130), but this may be because women attend all levels of medical care more frequently than men.63 CFS does not preferentially affect individuals from upper socioeconomic groups (contrary to the notion of "yuppie flu").30 Rather, some studies suggest that fatigue syndromes may be more common in people from more socially disadvantaged groups.13,40,62,64 One study has suggested that nurses have a high rate of CFS, indicating that specific occupations may be at risk.65 It is unlikely that common, non-specific viral illnesses trigger the onset of CFS, but specific infections, such as mononucleosis, quite commonly do so. A large controlled study in general practice66 found that people presenting with minor symptomatic infections were no more likely to report chronic fatigue subsequently than those presenting for other reasons. By contrast, a prospective cohort study following individuals with serologically confirmed Epstein-Barr virus infection documented the development of a chronic fatigue state that was independent of psychiatric diagnoses.67 In the Australian context it appears that infections such as Q fever and Ross River virus infection may also trigger CFS.68-71 Does CFS overlap with other illnesses? Fatigue is a central feature of many clinical syndromes (see Box 1.2), including CFS, fibromyalgia, irritable bowel syndrome, major depression, anxiety and somatoform disorders.72-82 These syndromes also share other, non-specific symptoms, including musculoskeletal pain, sleep disturbance, neurocognitive impairment and mood changes.83 Fibromyalgia, in particular, is a closely related syndrome, differing mainly in its relative emphasis on musculoskeletal pain rather than fatigue.73,84-89 1.2: Overlapping diagnoses Prolonged fatigue states are found in fibromyalgia, irritable bowel syndrome, anxiety and depression, as well as in chronic fatigue syndrome The number of non-specific medical symptoms reported by people with CFS is strongly correlated with the presence of psychological symptoms.16,90 Up to two-thirds of adults with CFS have either prior or concurrent major depression,36,40,60,74,91-98 as do people with fibromyalgia99 and irritable-bowel syndrome.100,101 By comparison, the lifetime rate of comparable depressive disorders in the general community is 15%-25%.102-106 The high rate of comorbidity is not surprising, as current diagnostic criteria for both CFS and major depression (DSM-IV;107 ICD-10108) include fatigue, sleep disturbance and cognitive impairment, and the presence of mood changes is no longer an exclusion criterion for the diagnosis of CFS. Perhaps the most difficult diagnostic uncertainty between CFS and psychological illness is in relation to "somatoform" disorders (DSM-IV107). In these disorders, people present with medically inexplicable physical symptoms that are hypothesised to be the result of underlying psychological processes. As the causes of CFS are "unexplained", there is an obvious overlap between the diagnostic criteria for the somatoform disorders and CFS.16,90,109-112 A recent international multicentre study attempted to stratify patients diagnosed with CFS in tertiary referral centres, without prior clinical assumptions.113 The results suggested heterogeneity, with variation between centres, but it was not possible to determine whether the hypothesised subgroups (with "classical CFS" versus "multiple somatic" symptoms) lie on a continuum or represent truly distinct aetiological categories. Nor was it clear whether somatic symptoms were the result of a constitutional vulnerability or were secondary to chronic illness. It was concluded that, although stratification was likely to be important in future research, the basis for allocating subcategories remains controversial. Whether it will ever be possible to neatly separate a "core condition" of CFS16,33 from other "functional somatic syndromes"114 or to successfully delineate aetiological subcategories of CFS patients remains unclear.18,83 Whatever the case, however, in everyday clinical practice "somatisation" and "somatoform" are unhelpful diagnostic labels which are best avoided in patients with CFS (see Chapter 5). Food and environmental intolerances Though not considered a "cause" of CFS, some patients with chronic fatigue report food intolerances that can exacerbate symptoms.115,116 If food intolerance is suspected on clinical grounds, dietary investigation under the supervision of an appropriately qualified physician and dietitian may be warranted. Some studies have suggested an overlap between CFS and multiple chemical sensitivity (MCS)82,87,117-124 Gulf War syndrome124,125-128 and "sick building" syndrome.129 The existence of these as valid diagnostic or ontological entities is highly contentious82,130-138 and their consideration is beyond the scope of these clinical practice guidelines. 1.3: Evaluation of the evidence for infections as factors in the pathophysiology of CFS Non-specific infections Raised titres of IgG antibodies directed against common viruses (eg, herpesviruses, enteroviruses) are common, but are of no pathophysiological or diagnostic significance51,173,184 (Level I). Common, non-specific infections (eg, upper respiratory tract infections) are not likely to trigger CFS66 (Level II). Epstein-Barr virus Infectious mononucleosis can trigger CFS67,185-188 (Level I). Reactivation of EBV is not more prevalent in CFS94,190-192 (Level II). Enteroviruses Earlier reports of enteroviral RNA particles in the muscles have not been confirmed by more comprehensive studies192-200 (Level I). Retroviruses There is strong evidence against a role for retroviruses in CFS201-208 (Level I). Human herpesvirus-6 There is conflicting evidence for reactivation of HHV-6 replication176,184,191,209-216 (Level III-4). Ross River virus Retrospective studies suggest CFS may follow RRV infection30,70,217 (Level III-2). Borna disease virus There is conflicting evidence of Borna disease virus infection in patients with CFS184,218-222 (Level III-4). Non-viral infections (Q fever, Lyme disease, Mycoplasma) Retrospective studies suggest CFS may follow adequately treated Q fever or Lyme disease68,69,223-228 (Level IV). The existence of Lyme disease in Australia has not been confirmed229 (Level III-3). An increased prevalence of colonisation by non-pathogenic mycoplasmal commensal species has been detected by polymerase chain reaction in the blood of a proportion of patients with CFS230-232 (Level III-2). Comment: Many studies that have suggested a link between infections and CFS have relied upon the detection of antibodies against the viral or other agent as an indirect means of implicating the organism in the pathophysiology of CFS. These studies have suggested that "high" titres of IgG antibodies directed against viruses such as EBV, HHV-6 or enteroviruses reflect chronic, active viral infection. However, case-control studies indicate that such "elevated" antibody titres are also found in healthy individuals many years after the original infection. Those studies which have sought direct evidence of chronic viral replication have not found an increased prevalence of viral isolation in people with CFS. 1.4: Evaluation of the evidence for immunological factors in the pathophysiology of CFS General Despite numerous studies there is no consensus on the pattern and prevalence of immunological disturbance in people with CFS165,233 (Level III-4). Preliminary evidence of an HLA association234 has not been confirmed235 (Level III-4). Lymphocytes Reduced lymphocyte proliferation and natural killer cell cytotoxicity are common, but findings are non-specific94,149,198,236-252 (Level I). Despite numerous studies there is no consensus on the pattern and prevalence of changes in peripheral blood lymphocyte subpopulations or activation status149,198,240-242,246,247,249,253-259 (Level III-4). Immunoglobulins There is conflicting evidence for reduced serum immunoglobulin G (IgG) and IgG subclass levels239,260-264 (Level III-4). Atopy There is conflicting evidence for an increased prevalence of atopy174,265-272 (Level III-4). Delayed type hypersensitivity skin responses There is conflicting evidence for impaired DTH skin responses24,198,239,245,273-275 (Level III-4). Cytokines Numerous studies using different methods have yielded conflicting evidence for increased serum levels of cytokines or cytokine production94,198,237,276-292 (Level III-4). Antiviral immunity Alterations in the 2-5A synthetase/ribonuclease (RNase L) antiviral pathway have been described in a significant proportion of patients with CFS293-295 (Level II). Autoimmune/inflammatory conditions There is conflicting evidence of a role for autoantibodies296-299 (Level III-4). Sicca symptoms are common and a subset of people with CFS meet clinical but not laboratory criteria for Sjögren's syndrome26,300-302 (Level II). An increased prevalence of elevated serum angiotensin-converting enzyme levels has been reported in patients with CFS303 (Level III-3). Comment: Numerous studies have sought evidence for a disturbance in immunity in people with CFS, but no consensus has emerged. The divergent results are likely to have arisen from variations in methodology, as well as inadequate attention to important confounding variables such as the effects of sleep disturbance, diurnal variation, medication, mood (and others) on laboratory measures of immunity. 1.5: Evaluation of the evidence for disturbance of central nervous system function as a factor in the pathophysiology of CFS Neuroendocrine function Sleep Impaired hypothalamic-pituitary-adrenal (HPA) axis activation has been shown304-323 (Level III-2). There is conflicting evidence for reduced levels of insulin-like growth factors (IGFs)324-327 (Level III-4). Sympathetic nervous system function Disturbances of sleep maintenance (eg, frequent awakenings) are prevalent81,328-331 (Level III-2). There is conflicting evidence of disturbed circadian rhythm332,333 (Level III-4). Sleep disruption or circadian rhythm disturbance may perpetuate musculoskeletal symptoms77,334,335 (Level III-3). Neurotransmitter function Altered blood pressure responses to postural change, consistent with neurally mediated hypotension, have been shown336-345 (Level III-2). There is conflicting evidence for reduced sympathetic nervous system markers340,346-348 (Level III-4). Brain structure/function There is conflicting evidence for increased sensitivity of serotonin and dopamine receptors to antagonists305-307,349 (Level III-4). Cognitive performance There is conflicting evidence for an increased prevalence of white matter abnormalities on magnetic resonance imaging176,350-363 (Level III-4). Regional cerebral blood flow studies (eg, single photon emission computed tomography [SPECT]) have produced conflicting results176,350-361,364-366 (Level III-4). Gait and motor abnormalities have been described367,368 (Level III-2). Psychological/psychiatric factors Attention, concentration and other measures of cognitive function are impaired361,369-383 (Level I). Interpretation of findings is uncertain.384 There is conflicting evidence for impaired visual and auditory memory361,369-378 (Level III-4). Comment: Several lines of evidence suggest that a disturbance of central nervous system function is present in people with CFS. This disturbance is reversible and, as yet, poorly characterised. The pattern of alteration seen in people with CFS in these studies contrasts with that seen in people with major depression, suggesting different pathophysiological processes in these two syndromes. Changes in biological markers (eg, HPA axis function, immunity, sleep architecture) in patients with major depression are different from those in patients with CFS81,245,307 (Level III-2). There is conflicting evidence of a role for personality factors.385-390 There were no differences in perfectionism, attitudes towards mental illness, defensiveness, social desirability or measures of neuroticism when patients with CFS were compared with a control group with rheumatoid arthritis391 (Level III-4). Increased measures of suggestibility have been reported392 (Level III-3). Childhood sexual or physical abuse were not found to be risk factors for development of CFS393 (Level III-3). In a retrospective study, patients with CFS were more likely than controls to have experienced critical life events, infections and high fatigue levels during the three months before onset of CFS394 (Level III-3). There is conflicting evidence of rates of premorbid psychiatric disorders (depression, anxiety, somatisation disorder) in patients with CFS91-99,395 (Level III-4). 1.6: Evaluation of the evidence for other factors proposed to contribute to the pathophysiology of CFS Genetic factors Studies in twins suggest a genetic vulnerability to idiopathic chronic fatigue and possibly CFS396,397 (Level III-2). Neuromuscular disorder Muscle strength, endurance and recovery are normal179,398-402 (Level I). Conflicting evidence for a disturbance in mitochondrial function403,404 (Level III-4). The hypothesis that CFS is the result of channelopathy is not supported by empirical data405,406 (Level IV). Cardiac abnormality Subtle abnormalities of cardiac function with exercise have been described407-409 (Level III-2). Metabolic disturbance Urinary excretion of protein metabolites may be altered410-412 (Level III-2). Serum acylcarnitine deficiency has been reported413 (Level III-3). Differences in total body potassium levels between patients with CFS and control patients have been reported414 (Level III-3). Poisoning Levels of chlorinated hydrocarbons may be increased415,416 (Level III-3). Chronic exposure to industrial solvents, insecticides or pesticides may cause an illness resembling CFS417-419 (Level IV). Silicone breast implants may be associated with a syndrome resembling CFS75,84,118,420-423 (Level IV). Ciguatera poisoning may precipitate a syndrome resembling CFS424, (Level IV). Comment: Apart from the strong evidence indicating that the muscle is not the site of pathophysiological disturbance giving rise to fatigue in people with CFS, these studies provide only very limited preliminary evidence of other possible factors linked to CFS. What is the natural history of fatigue states? In the early stages of an illness characterised by prolonged fatigue, spontaneous recovery is common.139 After infectious mononucleosis 41% of patients reported prominent fatigue during the acute illness, of whom 71% had prolonged fatigue one month later, 43% at two months, and 9% at six months.67 By contrast, full recovery in patients with established CFS is less common. In prospective studies, rates of self-reported improvement vary from 11%-64%,140-143 and worsening at 12-18 months was reported in 15%-20%.140,143 A US population surveillance study estimated a cumulative five-year recovery rate of 31%.144 The long-term outcome of CFS has been evaluated mostly in people treated within tertiary referral settings.140,145-150 Such patient samples are biased towards chronic illness and limited patterns of recovery.60,91,139 Patient reports drawn from self-help group populations show similar biases with respect to functional impairment.146 In an Australian study conducted in a specialist setting,150 65 of 103 patients (63%) who had had symptoms for about five years reported abatement of symptoms and improvement in functional capacity over the next three years, but complete recovery was uncommon (6%). During follow-up, patients were very unlikely to develop other medical disorders (2%), but a significant number did develop other psychological disorders (19%), notably major depression and anxiety. Similar outcomes were confirmed in several other retrospective studies from tertiary referral centres. Factors associated with poorer outcomes include illness duration, subjective cognitive impairment and somatic symptoms,143-151 as well as high levels of fatigue or functional impairment and a low sense of control over symptoms.140 Outcome has not been found to be associated with sex or life stress events,146-152 or with laboratory parameters, such as viral antibody titres and immunological measures (including T-cell-subset measurements).153 At the more severe end of the clinical spectrum, although improvement over time can occur, the prognosis for recovery is poor.154,155 Patients who have had CFS for more than 10 years are more disabled than those with shorter-duration illness, and have significantly more severe symptoms (particularly cognitive impairment) and more frequent symptoms of fibromyalgia.156 Among 2075 people followed up in 19 published studies of the outcome of prolonged fatigue and CFS, there was one death by suicide and two unrelated deaths.139 These studies included mean follow-up periods ranging from six months to four years, suggesting that suicide rates and overall mortality are not increased in people with CFS. In studies of children and adolescents with CFS the outcome is significantly better than in adults. Two studies evaluating chronic fatigue in children reported that 77%-94% recovered or their condition improved.157,158 The average duration of illness is 2-4 years [see Chapter 4].159-163 Phenomena associated with CFS CFS does not typically follow common, non-specific viral illnesses (Level II). Specific infections such as infectious mononucleosis can trigger CFS (Level I). There is currently no convincing evidence that retroviruses cause CFS (Level I). Immunological alterations are common in people with CFS (Level III-4), but are of uncertain pathophysiological significance. Neuroendocrine changes indicating hypothalamic-pituitary-axis disturbance are common in people with CFS (Level III-4), but are of uncertain pathophysiological significance. Sleep disturbance is very common in people with CFS (Level I), but is of uncertain pathophysiological significance. Neurocognitive performance in people with CFS is impaired (Level I). Neuromuscular performance in people with CFS is normal, implicating the central nervous system as the likely site of pathophysiological disturbance (Level I). For an explanation of the rating of levels of evidence, see page S21. What is known about the pathophysiology of CFS? The pathophysiological basis of CFS is unclear. The leading hypotheses put forward over the past decade are summarised in Boxes 1.3 to 1.7 and include: a unique pattern of infection with a recognised or novel pathogen;164 altered central nervous system (CNS) function resulting from an abnormal immune response against a common antigen;16,165,166 a neuroendocrine disturbance;167,168 a neuropsychiatric disorder with clinical and neurobiological aspects suggesting a link to depressive disorders;169 and a psychologically determined response to infection or other stimuli occurring in "vulnerable" individuals.110,170-172 Other hypotheses exist but have not been scientifically evaluated. The probable heterogeneity within patient groups labelled as having CFS18,28,82,83,113 makes it highly likely that there are multiple contributing factors in the disorder. 1.7: Potential central nervous system pathways to chronic fatigue syndrome What is the cost of CFS to the community? The financial impact of CFS on those affected and on the community has been evaluated.22 A conservative Australian estimate of the direct costs (those incurred in diagnosis and management) was $1936 per case per annum (in 1988/89 dollars). After inclusion of indirect costs (from lost productivity associated with the disorder) the aggregate annual cost of CFS was $9436 per case (1988/89 dollars). In 2000/01 dollars, this represents a direct cost of $2764 per case and an annual aggregate cost of $13 471 to the community. Based on a conservative assumption of a community prevalence of CFS of 0.2% (200 cases per 100 000 population), this implies an annual cost to the Australian community of $525 million. 2: Evaluating people with fatigue Diagnosis Clinical diagnosis A diagnosis of CFS is made on clinical grounds (Level IV). Diagnosis relies on the presence of characteristic symptoms and exclusion of alternative medical and psychiatric disorders (Level IV). The physical examination in people with CFS is normal (Level I). People with CFS commonly have concurrent depression (Level I), which does not necessarily represent an alternative primary diagnosis. CFS frequently overlaps with other common syndromes such as fibromyalgia and irritable bowel syndrome (Level III-2). Laboratory investigation There is no validated diagnostic test for CFS (Level I). The purpose of laboratory investigation is to exclude other conditions that may cause fatigue (Level IV). For most patients the following investigations are sufficient: blood count and ESR, serum levels of electrolytes (including calcium and phosphate), standard biochemical tests of liver and kidney function, thyroid function tests (TSH) and urinalysis for protein, blood and glucose (Level I). Symptoms or signs that are not typical of CFS (eg, fever, weight loss, enlargement of liver, spleen or lymph nodes) should be investigated separately, as indicated clinically (Level IV). Specialist referral An experienced general practitioner should be able to make a diagnosis of CFS in most patients. Specialist medical or psychiatric referral is only required if the diagnosis remains in doubt (Level IV). For an explanation of the rating of levels of evidence, see page S21. What is "fatigue"? Patients who complain of persisting "fatigue" or "tiredness" may be describing any one of a diverse range of clinical phenomena, ranging from muscle weakness to dyspnoea or depressed mood. The initial task is to clarify the nature of the "fatigue". Fatigue, like pain, is intrinsically a brain-mediated sensation. As with pain, most people report that the fatigue is experienced as a peripheral phenomenon, apparently occurring in musculoskeletal regions. When questioned closely, most people with CFS report that they also experience "mental fatigue", typically precipitated by complex neuropsychological tasks.74,426 To differentiate the various causes of mental and physical fatigue, doctors should focus on the description of the complaint (Box 2.1). Fatigue in people with CFS is typically exacerbated by physical tasks previously achieved with ease, and recovery from periods of worsened fatigue can take hours or even days. Pathological fatigue can be differentiated from: somnolence (or "sleepiness"), as it is not relieved by sleep; neuromuscular weakness, as people with CFS can generate muscle strength and endurance when circumstances demand;24,400,427 and the lack of motivation and loss of pleasure from usual daily activities that characterise depressive illness. 2.1: What can a person with "fatigue" or "tiredness" be describing? In most instances the symptoms of chronic fatigue syndrome can be distinguished from the closely related phenomena of somnolence, muscle weakness, neuromuscular fatigability, depressed mood or anhedonia. Person describes: Interpretation Reduced muscle power at rest Difficulty walking or lifting weights ? Muscle weakness (eg, myopathy; polymyositis) Loss of muscle power over time with activity ? Neuromuscular fatigability (eg, myasthenia gravis) Physical and mental fatigue at rest ? Central fatigue (eg, multiple sclerosis) Lack of motivation to commence tasks Lack of pleasure from tasks undertaken ? Anhedonia (eg, major depression) Daytime sleepiness Short sleep latency ? Somnolence (eg, sleep apnoea, narcolepsy) Breathlessness at rest or on exercise ? Dyspnoea ? Weakness (eg, airflow limitation; cardiac failure; anaemia) Muscle pain, joint pain Fever, malaise ? Inflammation (eg, systemic lupus erythematosus) ? Infection (eg, influenza) How should fatigue be evaluated? CFS is distinguished from similar fatigue-related illnesses not only by carefully characterising the fatigue itself, but also by evaluating associated symptoms and signs. People with CFS also report: unrefreshing sleep; myalgia: arthralgia; loss of concentration; memory impairment; irritable mood, and postexertional malaise (may be delayed). Any of these associated features may be exacerbated by minor physical activity. Although these symptoms are common in people with CFS, they are not specific and may occur in a range of other medical and neuropsychiatric disorders. In adults presenting for medical assessment with fatigue states the most common alternative diagnosis to consider is major depression.25,36,39,40,66,74,92-94,96,97 Other commonly detected disorders (Box 2.3) are sleep apnoea, hypothyroidism, anaemia, coeliac disease, chronic hepatitis, panic disorder, generalised anxiety, and somatoform disorders.16,27,39,40,78,81,90,109 When taking a medical history, the questions should focus on key symptoms that might suggest alternative explanations for the fatigue state (see Box 2.1 and Box 2.3). Fatigue accompanied by fever, malaise and weight loss suggests an inflammatory or infective process, and fatigue accompanied by weight gain and cold intolerance may indicate hypothyroidism. Fatigue commonly accompanies many other medical conditions, particularly those directly involving the central nervous system and affecting information processing, the sleep-wake cycle, or arousal mechanisms (eg, multiple sclerosis). Many commonly prescribed medications (such as antihistamines and sedatives) and other substances (such as alcohol, marijuana and amphetamines) cause fatigue directly, or indirectly by disturbing the sleep-wake cycle. Similarly, physical examination should be directed towards elucidating alternative diagnoses. Apart from minor, non-specific signs of illness, the physical examination in people with CFS is normal.6 Evidence of objective muscle weakness, hard neurological signs, cardiorespiratory disease or fever should alert the doctor to diagnoses other than CFS (see Box 2.3). Although people with CFS often complain of tender cervical lymph nodes, demonstrable lymphadenopathy is not a feature.6 When patients have been definitively diagnosed with a medical or psychiatric condition known to be associated with marked fatigue, a separate diagnosis of CFS is generally not justified. 2.2: Flow chart for the evaluation of persistent fatigue 2.3: Alternative causes of chronic fatigue* Physiological Sedentary lifestyle Sleep deprivation Drugs Medication (eg, ß-blockers) Alcohol and drug dependence Infectious diseases HIV/AIDS Chronic hepatitis B or C Autoimmune disorders Systemic lupus erythematosus Rheumatoid arthritis Sjögren's syndrome Endocrine disorders Hypothyroidism Diabetes mellitus Cardiorespiratory disorders Chronic airflow limitation Cardiac failure Gastrointestinal disorders Coeliac disease Inflammatory bowel disease Haematological disorders Anaemia Sleep disorders Obstructive sleep apnoea Neuromuscular disorders Myasthenia gravis Multiple sclerosis Metabolic disorders Hypercalcaemia Psychiatric and psychological disorders Major depression Anxiety disorder Somatisation disorder School phobia Occult malignancy Occupational and environmental factors (eg, organic solvents, heavy metals) * Not an exhaustive list. What psychological evaluation is required? A formal diagnosis of CFS should not be made without an appropriate psychological evaluation of the patient.6 Although this need not be done by a specialist psychiatrist or psychologist, referral can be useful in selected cases for both diagnostic and treatment purposes. Like the medical evaluation, the psychiatric assessment consists of two distinct parts: the history and the mental state examination. Brief standardised approaches to psychological evaluation in primary care are available and have been shown to be effective.429 These include self-report questionnaires such as the GHQ-30430 and SPHERE,61,431 or structured interview schedules such as PRIME-MD.432 Important features of the history include prior episodes of anxiety or depression; a past history of multiple, unexplained physical symptoms; and prior alcohol or other substance misuse. Many people with depressive disorders complain of fatigue or pain, rather than overt psychological symptoms such as tearfulness or sadness. The family history should be reviewed for depressive disorder, self-destructive behaviour or substance misuse. The relationship between the onset of the fatigue state and relevant psychosocial stressors should be noted. Whenever possible, an independent, corroborating history should be sought from a spouse, partner or other family member. The characteristic mood state of people with CFS is irritation, frustration and transient depression, rather than persistent and profound sadness. This is unlike people with major depression, who report marked anorexia, weight loss, self-reproach and guilt, suicidal plans, persistent loss of motivation or a pervasive loss of pleasure.25,107,108,111 A careful review of the history of ill-health before the onset of CFS is the key to resolving the differential diagnosis of somatoform and somatisation disorders. A long-standing history of frequent medical investigation and treatment for unexplained physical symptoms, persistent fear of medical ill-health despite adequate assessment, preoccupation with unusual physical explanations of illness, and persistent rejection of the potential relevance of psychosocial factors may suggest the diagnosis.107,108 The mental state examination of people with prolonged fatigue should focus on the observed behavioural features rather than simply those reported by the person. These include psychomotor slowing (which may suggest a serious depressive disorder),433,434 demonstrable cognitive impairment (suggesting intoxication, delirium or a dementia syndrome), odd or bizarre interpersonal behaviour (suggesting a psychosis), and hostile, angry or excessively irritable responses (suggesting a personality disorder). Evaluating a person's risk of suicide is an important task. The major psychological risk factor for suicide is untreated depression. Most people who attempt suicide first present to a healthcare agency, although they typically complain of non-specific symptoms such as poor sleep, poor appetite and tiredness rather than depressed mood.435-437 Other risk factors for suicide include being male, social isolation, concurrent drug and alcohol use and access to lethal means.438,439 How should the context of the illness be assessed? As in the management of other chronic medical conditions, assessing the social circumstances and interpersonal relationships of the patient with CFS is a key component of the medical evaluation. Important issues to be addressed include: the effect of the illness on the person's ability to participate in work or school; the effect of the illness on key relationships (eg, partner, parents, friends); and the financial impact of the illness on the person with CFS and family. The functional impairment of people with CFS has been shown to be similar to or greater than that of people with other chronic disabling medical conditions (eg, multiple sclerosis)440 and psychological conditions (eg, major depression).20,21 Accordingly, the patient's current level of disability should be carefully assessed, with a review of the duration and intensity of physical activity that can be undertaken without precipitating prolonged fatigue. For example, it may be evident that an adolescent's 45-minute walk to school produces fatigue and other symptoms that last all day. At the severe end of the spectrum of CFS, people may be housebound and experience profound fatigue simply from the necessities of self-care, such as showering or dressing. A diagnosis of CFS is made after six months or more of disabling symptoms. By this time, people with CFS are commonly in crisis with their school or workplace because of the accumulated time lost as a result of the illness. Similarly, by the time of diagnosis, parents, friends and partners of people with CFS are often questioning the nature of the unexplained illness. The effect of the illness upon the patient's key interpersonal relationships,441-443 work or educational activities should be specifically evaluated. This will enable doctors to act as advocates for their patients by providing appropriate information to relevant individuals and institutions. Perspectives "We have had members of our support group who have been diagnosed with CFS, but who in fact did not have CFS but another disease. One woman endured five years of suffering until the correct diagnosis of systemic lupus erythematosus was made. She experienced substantial relief from drugs given to treat her lupus." - a patient support group "CFS is a sufficient indignity by itself; do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. Resist the temptation of a hurried, superficial evaluation." - Thomas English, MD428 "My cognitive difficulties were frightening and confusing. I often feared I was going crazy. I was ordinarily an intelligent man and avid learner, but suddenly my thinking was clouded and confused. I forgot things extremely easily. I mixed up words and I couldn't think of phrases I wanted to use. My concentration span was extremely short and my mathematical ability almost disappeared." - a person with CFS What laboratory tests are appropriate? Despite the wide range of serological, immunological, virological, psychometric and neuroimaging investigations that have been reported in case-control series of people with CFS (see Boxes 1.3-1.6), no specific diagnostic test for the disorder has emerged.6 For any laboratory test to be accepted as having diagnostic validity, it would need to demonstrate both high sensitivity (ie, almost all people with CFS have a positive result - few false negatives) and high specificity (ie, almost all healthy persons, and people with fatigue not due to CFS, have a negative result - few false positives). In fact, as the diagnosis of CFS currently identifies a heterogeneous group of people,16,113 it is unlikely that a single, reliable diagnostic test will emerge. The only laboratory tests currently recommended for the routine evaluation of people with fatigue states (Box 2.4) are aimed at detecting alternative medical conditions. The diagnostic yield of investigations beyond this restricted list is very low.444-447 If specific alternative diagnoses are suggested by the clinical history or examination (eg, sleep apnoea or multiple sclerosis), further investigations may be warranted. Many other laboratory procedures have been proposed as "diagnostic tests" by non-medical or alternative practitioners, but have not been subjected to rigorous evaluation. Such "tests" (eg, dark field blood testing for red cell morphology or "candida" identification; stool tests for "dysbiosis"; environmental sensitivity testing) have no basis in evidence and are not recommended. 2.4: Laboratory investigations for evaluation of people with chronic fatigue* Recommended Full blood count and film Erythrocyte sedimentation rate Urea, electrolyte and creatinine levels Serum calcium and phosphate levels Liver function tests Thyroid-stimulating hormone level Urinalysis for protein, blood and sugar Not recommended? Serological tests for: Epstein-Barr virus (Level II); Enteroviruses (Level II); Lyme disease in Australia (Level IV); Tests of immunity, including T lymphocyte subset measurements and functional assays (Level I); Urinary protein metabolite screening (Level III-3); Neuroimaging studies, including magnetic resonance imaging or radionuclide studies (Level III-3); Autoantibody assays (Level III-3); or Serum creatine kinase (Level II). *Tests to exclude other diagnoses may be performed if indicated by the clinical evaluation ? Available evidence indicates that these tests have no role in standard laboratory evaluation of people with CFS. When should another opinion be sought? Given the lack of diagnostic certainty in people with CFS and the reliance on clinical history and examination, it may be appropriate to seek another medical opinion during evaluation or treatment. Another opinion by an experienced primary care practitioner may be sufficient, but specific issues in diagnostic assessment or treatment planning sometimes require consultation with the specialist most relevant to the individual's needs. For example, a history of snoring and daytime somnolence is an appropriate indication for assessment by a sleep physician, which may be followed by overnight sleep study. People with severe or prolonged depression, severe anxiety symptoms, or those assessed as being at risk of self-harm may require psychiatric evaluation. Adolescents who are absent from school or occupational training for prolonged periods may benefit from assessment by a paediatrician. People who are persistently housebound with severe disability arising from CFS may require the assessment and advice of a team, including specialists in rehabilitation medicine, pain management, physiotherapy, occupational therapy, and social work. Perspectives "CFS is one of the loneliest illnesses in the world, because we don't have anything to show for it." - a person with CFS 3: Managing patients with CFS Management No single pharmacological treatment has been shown to be effective for people with CFS (Level I). Cognitive-behaviour therapy may be effective for some people with CFS (Level I). Physical and intellectual activities should be "paced" according to the individual's functional capacity (Level IV). Graded exercise may be effective for some people with CFS (Level II). Antidepressant drugs may provide symptomatic relief of pain, sleep disturbance, and depressed mood in people with CFS (Level IV). For an explanation of the rating of levels of evidence, see page S21. Principles of management Once the diagnosis of CFS is made, the doctor should establish an individualised management plan through a process of active discussion with the patient. The available pharmacological and non-pharmacological approaches should first be outlined, along with the role of continuing medical care and the place for physical, social and workplace (or school) rehabilitation programs. The importance of a collaborative approach between patient and doctor should be stressed. The plan should be designed within the framework of the patient's attitudes towards different modes of treatment, bearing in mind the limitations of existing evidence.448 The goal of treatment should be improvement towards and maintenance of maximal achievable functional capacity. While it is very unlikely that any single treatment will provide a "cure", current treatment approaches can result in significant reduction in disability over time. It is important to give the patient a clear expectation that sustained improvements are rarely achieved in short time frames (days to weeks), but many patients can return to acceptable levels of functioning over longer periods (eg, three to six months). Sustained improvements are rarely achieved without some setbacks and exacerbations of symptoms along the way. Frequent switching from one form of treatment to another in search of an elusive "cure" should be discouraged, as it is likely to result only in frustration and continuing disability. If patients are made aware of these possibilities at the outset, they will be less likely to abandon useful treatments prematurely. To facilitate the reduction of disability, active control of key symptoms (eg, pain, sleep disturbance and depressed mood) with standard treatments should be explored. These may include the use of analgesics, non-steroidal anti-inflammatory drugs (NSAIDs), antidepressants or hypnosedatives. If these pharmacological agents prove helpful for the patient, their ongoing use should be reviewed regularly and coordinated with appropriate non-pharmacological forms of care. For example, short-term use of hypnosedatives may assist at the beginning of a structured sleep-wake cycle modification program.449 Similarly, use of analgesics, NSAIDs or both may be necessary during the early phase of a physical rehabilitation approach. Or, if an antidepressant agent (eg, moclobemide) improves a patient's subjective sense of energy and wakefulness,450 this can provide an opportunity to embark on a return to school or work, or a social activity program. As with other chronic disorders, the patient's attitude to his or her illness experience, understanding of the nature of the disorder and its likely course over time, and the relationship between doctor and patient, are all likely to have a significant impact on long-term outcome.451 Doctors who take an active approach to providing accurate information and to discussing key issues with their patients on an ongoing basis are likely to achieve the best results. This does not mean that the patient and doctor need necessarily agree about all treatment decisions (eg, the use of alternative therapies). It does, however, mean that they should agree on realistic goals for the outcomes of conventional medical treatments. The significant non-specific (placebo) response rate in some controlled treatment trials for people with CFS is likely to be a reflection of these essential components of good clinical practice.452,453 As a general principle of good management of patients with CFS, it can be useful to introduce the concept of self-monitoring of key symptoms and associated disability. This can be achieved through a variety of standardised instruments (eg, SPHERE,431 Brief Disability Questionnaire) and activity, sleep-wake cycle or pain diaries. These allow both the doctor and patient to develop an accurate picture of whether progress is being made with a particular treatment, or whether there has been spontaneous improvement over time. Such monitoring may also alert the doctor to the emergence of a change in key symptoms or disability. When people with CFS develop significant new symptoms, or experience a marked change in symptoms, they should be carefully reassessed. New symptoms should not automatically be assumed to be part of the CFS symptom complex. Within this context the emergence of depression and other psychiatric complications is particularly relevant.450 Perspectives "We believe that the management and treatment of psychological symptoms in people with CFS should be similar to that for people with other chronic medical illnesses. Psychological symptoms in CFS can include depression, anxiety, and panic attacks among others." - a patient support group "The doctor has the major responsibility for the care of people with CFS. However, many people do not have a supportive, well-informed medical practitioner. For them, the support of local community services is vital. The doctor and community services must work together to meet the needs of people with this disorder." - a patient support group 3.1: Breaking vicious circles - a rationale for therapy Perspectives "My GP has the greatest role in helping me manage my illness on a day-to-day basis, although he refers me to a specialist when he thinks we could use help with a particular problem. For instance, when it was getting too hard for me even to manage my kitchen, he found an occupational therapist to help me redesign my domestic arrangements." - a person with CFS Pharmacological treatments for CFS A range of antiviral, immunoregulatory, antidepressant and metabolic drug regimens have been evaluated in double-blind, placebo-controlled trials in people with CFS. Although limited positive responses have been reported, no agent has consistently shown long-term efficacy in well-designed studies.35 Intravenous immunoglobulin (IVIG): Four double-blind, placebo-controlled trials of therapy with IVIG (based on a hypothesis of disturbed immunity in people with CFS) have been published.264,273,454,455 Two of these trials conducted by one research group in Australia produced conflicting results, with the larger, dose-ranging study showing no significant benefit.273,455 IVIG is not recommended for adults with CFS. Antidepressants and other CNS agents: Given the high rate of depression, and depression-related symptoms such as fatigue, sleep disturbance, poor concentration and irritability in people with CFS, antidepressant therapies have received considerable attention. To date, there has been no evidence that patients respond in the way that would be expected if CFS were simply misdiagnosed or "masked" major depression. However, certain agents have been found to be beneficial for patients with CFS, particularly those with significant mood or sleep disturbances. Moclobemide (a reversible monoamine oxidase inhibitor) has been evaluated in a large double-blind, placebo-controlled trial.450 Limited evidence of benefit was observed, with an improvement in the subjective sense of vigour and energy that was not associated with any alteration in mood. Similarly, selegiline (a specific monoamine oxidase inhibitor) has been reported to relieve tension and anxiety, and improve vigour and sexual relations.456 All of these agents are somewhat "amphetamine-like" in their actions. While this may assist with key symptoms like fatigue, wakefulness and concentration, they should be used cautiously and closely monitored for side effects such as agitation and insomnia. Their most effective use may be in combination with an active sleep-wake cycle approach.449 While the new serotonergic agents are particularly popular for treating major depression, there has been little evidence of their overall usefulness in patients with CFS. In one of the first large trials, fluoxetine (a selective serotonin reuptake inhibitor [SSRI]) showed no more benefit than placebo.457 However, SSRIs may have a place in patients with concurrent major depression or a strong personal or family vulnerability to anxiety or depression. SSRI therapy needs to be closely monitored for adverse side effects such as nausea, agitation and gastrointestinal disturbances in the early stages of treatment. As SSRIs may disturb sleep-wake architecture during the first few weeks of treatment, patients should also be closely monitored for any exacerbation of the CFS symptom complex. From this perspective, the older tricyclic agents and some of the new antidepressants with more sedative properties (eg, nefazodone) may be more suitable for some patients. Studies of combination therapy with a low dose tricyclic antidepressant and an NSAID in people with fibromyalgia showed beneficial effects on muscle pain and sleep disturbance, but not on fatigue or mood.458,459 Corticosteroids: Two short-term, placebo-controlled trials of low-dose hydrocortisone therapy in patients with CFS showed a reduction in fatigue and improvement in "wellness", but this was associated with a significant depression of adrenal function.460,461 Given the serious morbidity associated with long-term use,462 corticosteroids cannot be recommended for CFS based on current evidence. Mineralocorticoids: Although some patients have been found to have postural blood pressure changes consistent with neurally mediated hypotension (Box 1.5), mineralocorticoid therapy has not been found to be beneficial.463,464 The role of rehabilitation, behavioural and cognitive treatment approaches Rehabilitation, behavioural and cognitive approaches link the principles of good clinical management with varying degrees of graded physical activity and psychological intervention.153,465,466 They have been evaluated not only in patients with CFS, but in a wide variety of other closely related and often chronically debilitating medical and psychological disorders (eg, chronic pain, chronic daily headache, irritable bowel syndrome and chronic depression). Such treatments are not designed to achieve rapid symptomatic relief. Rather, they are aimed at maximising functional capacity over longer periods. For clinical trial purposes, a specific number of structured treatments are packaged over a set time period. In routine clinical practice, however, the initial treatment strategy is usually individualised according to the patient's level of disability and personal preferences, and subsequently modified according to the response. This is sometimes referred to as "pacing".448 The rationale for these approaches is outlined in Box 3.1. The behavioural component encourages planned and supervised resumption of appropriate physical and mental tasks. A physical activity program is individually designed to take account of the patient's current level of disability.467,468 After a prolonged period of illness and inactivity, new activities are introduced gradually and, most importantly, are "paced" (ie, scheduled to stop before they produce a significant exacerbation of symptoms). Over time the level of activity attempted is slowly increased at a rate determined by the patient's response. The cognitive component aims to identify beliefs, attitudes and behaviours that may impair recovery.469-471 Examples include a fear that any increased physical activity will cause harm or prolong illness; a belief that all treatment is futile and that only complete rest will help; a belief that complete withdrawal from work, school and social activities is necessary; a belief that occult chronic infection or chemical exposure has caused permanent injury. The existence of such beliefs is ascertained by exploring the person's causal attributions and his or her understanding of the illness. As simplistic illness attributions may be associated with poor outcomes,470 people with CFS should be encouraged to adopt the widest possible view of the medical, physical, and psychosocial management strategies to assist in coping with the illness.472,473 The doctor and patient should work cooperatively to improve understanding, attitudes and behaviours that can help maximise long-term function. In general, trials with more substantial differences between the intervention and the control treatment arms show the greatest benefits.474 Active treatment programs that emphasise strong behavioural components (physical activity, rehabilitation) achieve good short-term results, but studies that incorporate a cognitive component produce more sustained long-term improvements. This may be because patients more readily adopt lifestyle changes that help maintain improved functional capacity beyond the formal treatment period.465,475-477 On balance, current evidence suggests that rehabilitative, behavioural and cognitive approaches should be an integral component of managing people with CFS.478 This contrasts with previous beliefs that prolonged rest and social withdrawal should be advocated.479 By the time patients present with established CFS, many have already experimented with prolonged rest and have found it unhelpful. In some, it may be associated with an exacerbation of sleep-wake difficulties and fatigue. Doctors should ensure that patients are informed of the dangers of prolonged rest480 and the psychological risks of social isolation. Applying management principles In routine clinical practice these management principles can be applied within any of the following conceptual frameworks, depending on the preferences of the patient and the expertise of the doctor: A cognitive behaviour therapy model: This tends to suit practitioners and patients who are comfortable working with an overtly behavioural approach to managing CFS.466 Some patients find psychological terminology alienating, believing it to imply that their symptoms and disability are imaginary, contrived or "psychosomatic". Such beliefs are unfounded. Skilled practitioners who are able to explain the role of behavioural and psychological factors in a wide range of medical disorders can often overcome a patient's initial reservations and gain his or her confidence. When properly used, a cognitive behavioural management approach promotes active patient participation with self-monitoring, and takes account of previous experiences, both beneficial and adverse. Contrary to popular myths, this approach does not simplistically impose a psychological model of causation. Rather, it encourages patients to adopt a wider view of the range of medical and psychological approaches that can promote optimal long-term functioning. A disease education model: This approach is used in other chronic and relapsing conditions such as diabetes or asthma, and therefore best suits patients and practitioners who are most comfortable with an overtly "medical" management model.481 Within this framework (as with the cognitive behaviour approach) patients can be helped to gain a deeper understanding of their illness, adopt appropriate management strategies, avoid harmful treatments, and develop practical coping skills. As with many other chronic medical disorders, it is better for patients with CFS to be empowered through appropriate self-management and self-monitoring techniques482 rather than passively submitting to fruitless investigations and marginally effective medical interventions. A rehabilitation model: This is akin to approaches used for disabling medical conditions such as brain or spinal injury, stroke, or chronic heart and lung diseases.483 In the context of CFS, this model is best suited to doctors and patients who feel most comfortable focusing primarily on physical aspects of management. Limitations of the evidence There have now been a number of controlled or partially controlled studies of the various components of cognitive behavioural management approaches. Although most have shown significant short-term or longer-term benefit (or both), improvement has not been observed in all patients or in all studies,484,485 and, when observed, may be modest.486 It is important to note that studies differ substantially in patient selection, intensity and duration of treatment provided, and suitability of the "control" interventions used for comparison. In most studies patients were only included if they were physically well enough to attend clinics for assessment, treatment and follow-up. It is therefore difficult to extrapolate the results to patients with more severe disability. Moreover, many studies have significant refusal and drop-out rates, which may reflect on the acceptability of the treatment regimens. These factors significantly limit the generalisability of the findings.478 What is the role of sleep management? People with CFS experience a range of changes in sleep.77,112,328-331,487-491 The most common features are reduced sleep efficiency, longer sleep onset, increased awakenings during sleep, increased total time in bed, and disturbance of circadian rhythm. There is a growing view that sleep disturbance in patients with CFS may be part of a wider abnormality of sleep-wake cycle function, and that restoration of the normal sleep-wake cycle, with consequent normalisation of circadian rhythm, should be an important goal of therapy. In patients with CFS, behavioural approaches to sleep-wake cycle disturbance are likely to be more successful than pharmacological approaches, as the latter do not induce normal sleep. Cognitive and educational management approaches should be aimed at promoting an understanding of the role of disordered sleep, and dispelling any irrational fears or inappropriate beliefs about sleep. Relaxation training and stress management may be useful for some patients. Sleeping for longer does not appear to improve physical or mental functioning in patients with CFS, and excessive periods of daytime sleep or frequent napping serve only to further disrupt circadian rhythm. The aim of sleep management is to establish a regular, normalised sleep-wake pattern: try to avoid excessive night-time sleep periods; avoid going to bed too early in the evening; avoid stimulants during the evening period; wake at a regular time in the morning (eg, 7am); get out of bed at a regular morning time (eg, by 8am); reduce (to less than 30 minutes) or abolish daytime naps; and engage in daytime physical and mental activities (within the limits of the individual's functional capacity). While the recommendations above are generally considered helpful for promoting good sleep in a range of sleep disorders, direct evidence for their benefit in CFS is currently lacking. If a patient with CFS has a concurrent primary sleep disorder (eg, sleep apnoea, restless leg syndrome, narcolepsy), this requires specific intervention. 3.2: Treatments for chronic fatigue syndrome for which scientific evidence is lacking* Vitamin and mineral supplements Vitamin C Vitamin E Vitamin B6 Vitamin B12 Coenzyme Q10 l-Glutamine Magnesium Zinc Acupuncture Homoeopathy Naturopathy Chiropractic Tai chi Meditation Physical therapies Massage Colonic irrigation Cold baths Feldenkreis Aromatherapy Oxygen therapy Hydrogen peroxide Herbal treatments Echinacea Garlic Dietary restrictions "Hypoglycaemic" diet "Anti-candida" diet Low salicylate, low preservative diet * Not an exhaustive list. Perspectives "Each new proposed treatment might just be the one to set things moving in the right direction. They stretch from the sublime to the ridiculous, but you must try them all lest you risk the 'Don't you want to recover?' question. These treatments aren't always benign, often leaving you physically worse off than when you started, not to mention emotionally and financially." - a person with CFS "So far none of the alternative medicines have any scientifically proven benefit for people with CFS, although some individuals do seem to benefit from particular treatments they try. We also know that people who are desperate to get well may be exploited by practitioners offering unproven treatments. If a practitioner is offering alternative treatments to people with CFS, we believe that it is essential that they are informed of the cost and risks of the treatment, as well as whether there is any published scientific evidence to support its use." - a patient support group Unproven therapies in CFS Given the variable clinical course of CFS, the likelihood of spontaneous improvement and the possibility of non-specific (placebo) responses, properly controlled clinical trials are essential for the evaluation of all proposed new treatments153 (see 3.2). Any claim that a particular treatment can "cure" most people with CFS should be regarded with a high degree of scepticism, not least because patient cohorts in CFS treatment trials are generally heterogeneous16,113 and hence unlikely to respond in a uniform fashion. It should be borne in mind that in some controlled trials over 30% of people with CFS may show improvement in the non-specific (placebo) treatment arm.153,450 In general, evaluation of proposed new treatments for people with CFS requires: a plausible scientific rationale for the agent or treatment method to be tested, and preliminary findings showing safety and potential efficacy (phase I data); and extension of clinical studies beyond short-term, anecdotal or case-series approaches to randomised controlled trials that evaluate long-term treatment outcomes.490,491 The validity of the results of clinical trials is highly dependent on the quality of study design and analysis.492,493 Critical methodological requirements are: use of an internationally accepted case definition;6,32 random assignment to test or comparison groups; adequate sample size; use of well-characterised outcome measures494 and standardised self-report instruments for measuring fatigue, mood and other key symptoms;32 independent, blinded assessments of functional status at onset, completion of treatment, and three to six months later (to ensure durability of the treatment effect); and reporting of refusal and drop-out rates, and of the type and frequency of adverse side effects. Even with well-designed trials, positive results should be independently replicated495 before a new treatment is widely promoted to the general public. The use of essential fatty acids for CFS is a case in point.496 Doctors are encouraged to discuss frankly issues about evidence - including what is known and what is not known - to ensure that patients are able to make informed decisions about treatment. 4: CFS in children and adolescents CFS in young people CFS can occur in children and adolescents (Level I). Clinical improvement is reported frequently in adolescents with CFS, with return to normal functioning over time in a significant proportion (Level III-2). An individualised management plan should be developed in partnership with the young person and their family (Level IV). The special needs of young people - social, educational and emotional - should be given high priority (Level IV). Perspectives "So often I am told I don't look sick. Most of the time now I don't tell people I'm sick when I go out. When you're in a support group; however, it's good not having to continually justify yourself. I've formed many strong friendships through my support group which I think will far outlive my battle with CFS." - a young person with CFS Prevalence The prevalence of CFS in adolescents in Australia is not known, although in a prevalence study by Lloyd et al30 20% of those diagnosed with CFS were in the 10-19-years age range. In the United States, prevalence estimates among adolescents reported by Marshall160 depended on the method of case acquisition. These ranged from 116 per 100 000 (telephone interview of CFS-like illness in San Francisco) to 22-26 per 100 000 (school nurses reporting diagnosis, Wichita, Reno) and 3 per 100 000 (physician surveillance: referred cases in four centres).497 All socioeconomic groups are represented and females comprise 71%-74% of the total.160,162,454,498 Onset The onset of the illness in children is typically reported to be abrupt, following a suspected or confirmed viral illness in 85%.498 A seasonal variation with peak onset in autumn and winter has been reported in Australia, suggesting an infectious contribution.498 Epstein-Barr virus (EBV) was the most common infection to be documented serologically at the onset of fatigue symptoms (12% of 290 cases); others were cytomegalovirus, Ross River virus, toxoplasmosis, chickenpox and Mycoplasma. Findings are similar in the US, with most adolescents reporting fatigue following a viral illness, most commonly EBV.160,499 Symptoms An Australian series of 290 adolescents with CFS from a tertiary referral practice showed a clinical picture highly consistent with that characterised in adults. Prolonged fatigue after physical activity was present in all individuals. Headache, loss of ability to concentrate, the excessive need for sleep, excessive fatigue and myalgia following minor activity, nausea, abdominal pain, sore throat without coryza, and a feeling of disturbed balance were present in 87%, with symptoms rated as severe or moderately severe in over 50%. Feelings of depression and sadness were present in more than 50%. Twenty per cent of individuals met diagnostic criteria for fibromyalgia, a similar figure to that reported in other series.157,158,500-502 The course of the illness also varies. About two-thirds of individuals report continuous symptoms with fluctuating levels of severity, and 15% have a relapsing-and-remitting course.159 Differential diagnosis in young people The range of conditions that need to be excluded is less extensive than for adults. Recommended investigations are identical to those in adults, including a urinalysis, a full blood count, erythrocyte sedimentation rate, biochemical tests of kidney and liver function, and thyroid function tests. Systemic lupus erythematosus (SLE) and other connective tissue disorders may present with lethargy and musculo-skeletal symptoms. Inflammatory bowel disease, coeliac disease, and gastrointestinal infection (eg, giardiasis) should be considered if there is abdominal pain, altered bowel habit or weight loss. A diet history should form part of the routine assessment. Occasionally, restrictive diets that are implemented in a search for alternative therapies have resulted in significant weight loss. Significant weight fluctuations, cessation of menses, altered body image and abnormal eating behaviour should raise the question of an eating disorder. Adolescents with CFS often feel miserable, frustrated and angry, particularly after several months of illness. However, young people readily differentiate between feeling miserable meaning "fed-up" from miserable meaning "life is not worth living". Some groups report a higher rate of depression in young people with CFS compared with other chronic illnesses,160 but the sample sizes were small and such series are susceptible to selection bias. When somatic symptoms characteristic of CFS are excluded from the commonly used depression scales, only a small proportion have major depression with anhedonia (7%). The rate is higher in adolescents with more severe CFS, particularly when there is a gradual onset and delay in diagnosis. Anxiety about returning to the school situation is common in children and adolescents with CFS.503 If extreme, however, other conditions that can mimic or complicate CFS should be considered (eg, depression, eating disorders, school refusal syndromes and, rarely, child abuse).448 Prognosis Clinical improvement with return to normal functioning is frequently reported in adolescents with CFS, although the longest follow-up studies indicate that a small proportion remain unwell. The average duration of illness is 2-4 years with a range of 1-9 years until well.159-163 Illness pattern varies - about two-thirds have continuous symptoms with fluctuating levels of severity, and 15% have a relapsing-and- remitting course.159 One follow-up study reported that improved functioning rather than return to completely normal health was a relatively common outcome after implementation of a structured management program.162 This program consisted of educational support, graduated exercise, symptom relief, social contact and guidance on planned energy use. After an average of three years (range, 1-6 years) 30% were back to normal, and an additional 20% had mild symptoms following vigorous exercise, but with an otherwise normal activity level. Another 20% were functioning at less than 50% of their previous level of activity, including participation in school or work. Greater morbidity was linked with delay in diagnosis and in receiving assistance. Management For young people, CFS often poses special problems that relate to their development.504,505 Some problems are specific to CFS, while others relate to the effect of chronic illness on the emotional and social aspects of adolescent development, examples of which are: learning to become autonomous; developing a sense of body image; understanding and developing relationships; making career plans; dealing with sexual drives; and developing value systems. Loss of time from school, reduced stamina for writing, and difficulty concentrating (being slower to do things and being only able to concentrate for short periods of time) all contribute to significant educational disruption. Perhaps the most significant effect on schooling, however, relates to the loss of social contacts and access to social learning that plays such a large part in school life. A management plan should be developed in partnership with the young person and his or her family.448 The individual's illness pattern and severity should be taken into account when designing an individualised program. Although few randomised treatment studies have been performed in children, several strategies have been proposed as helpful.161-163,503,506,507 Symptom management should include treatment of headache, sleep disturbance, nausea, abdominal pain and dysmenorrhea, and muscle aches and pains. Depression and anxiety symptoms should be recognised and treated. Activities should be undertaken in a "paced" fashion and planned over a weekly period. The young person with CFS should be encouraged to balance social, physical and intellectual activities, and to make a commitment to undertake segments of each component regularly. This allows the individual to regain some control over their life. A gradual increase in physical activity with school attendance, or a graduated exercise program at home, can be incorporated into an overall weekly plan. Maintaining social contact should also be given high priority. This may be through school or via extracurricular activities. Contact with support groups can also be helpful. Liaison with the school is essential in order to design an education program involving attendance for particular subjects, or organising some school work by distance education with incorporation of social contact. Early planning and implementation of an educational program is desirable (ie, within 4-6 weeks of onset). Once clinical improvement occurs, a "tailor-made" program for returning to school can be instituted. Returning to school can be anxiety provoking and stressful for young people with CFS because of remarks made by peers or teachers, as well as the resumption of physical, intellectual and social activities. A loss of confidence in social skills and intellectual ability is commonly reported. Perspectives "Support groups for adolescents and young adults with CFS have proved to be a great success wherever they have been established. They demonstrate the value of, and need for, social interaction with others in the same situation. People with CFS are no different from people with other chronic illnesses in this respect." - a patient support group "One consequence of being chronically ill for years at a time is the isolation. As much as you try, it is very hard to keep up the old friendships from school, work and uni. People move on, but I have not been able to go out and socialise like before." - a person with CFS Is referral to a specialist paediatrician necessary? In a survey of adolescents with CFS, general practitioners were considered to be most helpful when they recognised the illness, acknowledged its effects, provided ongoing support, and monitored progress.161,162 Specialist paediatricians were found to be helpful in: confirming the diagnosis; formulating and coordinating a plan of management; providing suggestions for symptom management; and providing documentation for and referral to education authorities (to arrange distance education, special consideration and special provision for Year 12 assessments, etc). 5: Social and legal issues Implications of diagnosis Making a diagnosis of CFS encourages appropriate treatment planning (Level IV). A diagnosis of CFS does not establish a specific aetiology (Level I). Perspectives "Health professionals find it easier to label patients with depression, rather than recognise and acknowledge the natural grief reaction to the profound losses which occur with CFS - loss of health, disrupted family life, interrupted education and career, low self-esteem, etcetera. You can't dispense antigrief pills." - a person with CFS Diagnostic labelling of patients with fatigue In the general population, fatigue states form a continuum in terms of severity and duration, and it is only in those with the most severe and persistent symptoms that a diagnosis of 'CFS' may be appropriate. Although the internationally accepted CFS case definition remains the "gold standard" for diagnosis, it is necessarily arbitrary, having been developed for the purpose of making valid comparisons between research studies carried out in different settings. As such, it creates an artificial boundary within the clinical continuum of fatigue states, giving the false impression that a specific clinical "entity" has thereby been delineated.18,29,46,508 In the absence of a clear understanding of aetiology and pathogenesis, the term CFS should be regarded as a descriptive label only.46,508 Diagnostic boundaries are further blurred by the clinical overlap with other conditions such as fibromyalgia, irritable bowel syndrome, neurasthenia, anxiety and depression, in each of which fatigue can occur as a major symptom.508 In each person with chronic fatigue the doctor must exercise clinical judgement in deciding whether CFS is an appropriate diagnostic label.46 What are the benefits of making a diagnosis of CFS? A formal diagnosis of CFS can have positive implications for both the patient and the doctor. It allows the doctor to approach the patient with a greater degree of confidence, to explain the nature of the problem, to outline what treatments are appropriate, and to give a considered opinion as to what the outcome might be. Making a diagnosis of CFS should also mark the end of investigations to exclude other causes of illness (except at annual review - see Box 2.2). From the patient's perspective, having a definitive diagnosis can go a long way towards relieving unwarranted fears and anxieties about the cause of symptoms.510,511 Importantly, also, it validates the patient's experience of illness and suffering, making it easier to inform others of the nature of the illness, and legitimising the patient's entry into medical care. Once a patient has engaged with the doctor in this process, a series of personal, social and legal obligations result.512,513 Family members, friends and employers can be expected to make appropriate allowances, and all concerned can be encouraged to make constructive contributions to the management plan. In the long term, this can help minimise morbidity.451 What are the disadvantages of a diagnosis of CFS? As with many other chronic disorders, media reports, popular books and fundraising campaigns generally focus on the more extreme and dramatic end of the severity spectrum in CFS. In consequence, for the majority who are not so severely affected a diagnosis of CFS may conjure up alarming images of being confined to bed or a wheel chair, and life-long invalidism. In most cases, careful discussion with a knowledgeable practitioner can dispel such illusions, but some patients still harbour gloomy thoughts of a bleak future, with shattered dreams of family and career prospects. The concern of some that "medicalisation" associated with providing a diagnostic label of CFS may create a self-fulfilling prophecy514 is not usually borne out by experience.510,511 In certain patients, however, the practitioner may consider it prudent to refrain from making a definitive diagnosis of CFS, or at least to be much more circumspect in applying the label. Thus, when the prognostic features are favourable (ie, younger age, less severe symptoms, shorter duration of illness) a more non-committal diagnosis, such as "post-infectious fatigue state", may be appropriate. Importance of the doctor-patient relationship Doctors who display the essential therapeutic characteristics of empathy, acceptance of their patient's suffering, non-judgemental style and a commitment to continued care are more likely to make an appropriate diagnosis515 and to minimise the adverse effects of the illness experience.452,513 Conversely, those who reject the patient's illness experience are likely to promote feelings of alienation and perpetuate ill health.516 A qualitative study of people with CFS found that lack of perceived medical support and understanding was associated with increased seeking of alternative medicine.517 Rejection by family, friends, peers and doctors leads many to experience CFS as a "delegitimising" illness.518 Dismissing a patient's suffering as non-existent or imaginary is anti-therapeutic.28 Broaching the issue of psychological factors in causation should be done with caution and sensitivity, avoiding stereotypic value judgements. The hypothesised role of "somatisation"110 is particularly problematic.111 Outdated and simplistic notions of "psychogenesis", with their implications of "imaginary" illness and "unconscious malingering", leave patients feeling stigmatised, guilty and resentful. Pejorative terms reflecting a false dichotomy between "organic" and "functional" disease519,520 are best avoided. Unwarranted speculation about psychogenesis, based on the outcome of trials of cognitive behavioural therapy in CFS, should also be avoided. This is only likely to further alienate patients and cause resistance to potentially beneficial management strategies. If an effective therapeutic relationship is to develop, doctors must acknowledge that, despite the current lack of understanding of the underlying cause and mechanisms of chronic fatigue, the symptoms are real and the suffering and associated disability is genuine.448 Perspectives "Currently, community services in Australia serve people with CFS, their families and carers very poorly. Services and support for people with other chronic and serious illness are generally provided without the ambivalence, relative ignorance and generally negative attitudes with which the support is provided to people with CFS, their families and carers." - a patient support group The role of patient support groups Support groups have gained prominence in many areas of medicine, including in CFS, and they fill an important gap in areas that have traditionally been poorly catered for within the healthcare system. For individuals and families, they provide an opportunity to share experiences and exchange ideas on coping with practical day-to-day difficulties; they disseminate information on availability and quality of medical and government services, and news of research and treatment advances; and they can offer welcome relief from the sense of isolation that some patients feel. Support groups also have a more general advocacy role, for example in lobbying government agencies to improve funding for patient services, in fund-raising for ancillary services and research, and in promoting community awareness of the plight of sufferers (Box C, page S26). Not all aspects of CFS support groups are necessarily positive. Inevitably, they tend to attract patients with the greatest functional impairment,146 and this may inadvertently reinforce stereotypes of chronicity, disability and dependency. Moreover, the quality of advice can vary within and between groups, so it is important for practitioners to have ongoing knowledge of the activities and attitudes of local support groups. Whenever possible, doctors should seek to work cooperatively with support groups. If effective dialogue is to be established and maintained, professionals must be sensitive to the concerns of patient groups, particularly in relation to the inappropriate use of pejorative and stigmatising terms.521 Arrogant and dismissive professional attitudes, amplified by polarised press coverage, can contribute to the alienation of patients from traditional medicine.517,522 Poor communication can also perpetuate misconceptions about aetiology, natural history and treatment rationales, which may themselves contribute to disability.48,110,514,523 Occupational issues Many people with CFS struggle to continue working, despite their chronic illness, for reasons such as self-fulfilment, social identity, or economic necessity. The doctor can provide support by appreciating the specific difficulties experienced by CFS sufferers, and suggesting appropriate coping strategies. Limited energy, cognitive impairment, and memory lapses can impair work effectiveness, placing jobs in jeopardy. Arranging flexibility, prioritising work and compensating for deficits are commonly adopted mitigating strategies.524 Unpredictability resulting from the fluctuating nature of fatigue symptoms525 is a significant problem in conforming to a work routine. Flexibility can often be negotiated in the form of shorter hours or a shorter working week, a variable work schedule with breaks for rest as needed, or discretionary task selection to match variations in capacity.524 Many patients choose to stop working, or are unable to continue, either temporarily or permanently. Practitioners should be supportive in helping patients make the most appropriate choices in relation to their own personal priorities. Those for whom "life is career", and whose struggle to keep working is proving unsuccessful, may become deeply depressed, whereas those who see the maintenance of family and social life as a higher priority may find giving up work a more rational and satisfying choice.524 Perspectives "People with CFS seeking financial support from superannuation funds often experience drawn out applications, ill-informed and hostile review panels, further medical tests, lack of consultation with the treating doctor and the need to resort to legal action in an effort to obtain some financial support. This puts people with CFS under significant stress and may impede recovery." - a patient support group Medicolegal issues Assessing a person with CFS for medicolegal purposes can be highly complex, and should be performed by a suitably qualified and experienced specialist. The role of the general practitioner is to provide factual information, such as details of consultations and referrals, investigations performed and treatment recommended. In verifying a diagnosis of CFS, the current international diagnostic criteria (Box A) should be applied, including documentation of the characteristic symptoms, the lack of abnormalities on physical examination and results of the recommended laboratory investigations. A psychiatric evaluation may be indicated to document any psychological comorbidity. Forming an opinion about the level of disability is a usual requirement in medicolegal assessment. Since CFS is a subjective illness, initial evaluation relies on a systematic review of the patient's self-reported functional capacity and an assessment of whether this is accurate. Corroborating information may be obtained from a partner or other family member, and from other practitioners with detailed knowledge of the patient. A doctor acting as an assessor or expert witness may be asked to provide an opinion on causation. Uncertainties regarding the aetiology and pathogenesis of CFS should be acknowledged, and conclusions about the role of infection, chemical exposure or the emotional demands of the workplace should be appropriately tentative unless the clinical evidence is clear-cut and compelling. Opinions about prognosis should be based on the known natural history, taking account of the duration, clinical course and severity of the individual's illness to date, and his or her progress in response to appropriate symptomatic and behavioural management measures. The notion of "permanent" disability is problematic, as most people with CFS improve gradually, and some eventually recover. In people who have been severely disabled and unable to work for more than five years, the probability of substantial improvement within 10 years is less than 10%-20%. This may be regarded as "permanent disability" for medicolegal purposes. In the absence of evidence of malingering, speculative judgements about unconscious motivation should be avoided. The psychoanalytic concept of "secondary gain" has been misused in medicolegal settings and does not rest on a solid empirical base.526,527 In evaluating patients with CFS, hypothesised secondary gains should be weighed against manifest secondary losses. The notion of "abnormal illness behaviour" is contentious,528 and the term should not be used as a diagnostic label. Acknowledgements We thank the following individuals: Andrew Lloyd, Ian Hickie and Cristina Ricci for their comprehensive review of the published literature and preparation of preliminary draft 1997; Helen Lapsley (former chair of the Quality of Care and Health Outcomes Standing Committee of the National Health and Medical Research Council) for advice on guideline development and assessment of levels of evidence; Craig Ellis (Consumer Health Forum representative) for preparation of the Compilation of Submissions document and A CFS Health Consumer Perspective document; with assistance at various stages from Dr Joan Rothery, Annella Wheatley (typing), Jim Oakley, Judith Lovett, Bernhard Leidtke, Diana Clifton and members of the Launceston CFS support group; the Commonwealth Department of Health and Ageing for providing the federal grant; and Victoria Toulkidis for managing the project.

Produced by a Working Group convened under the auspices of the Royal Australasian College of Physicians

Objectives: To derive indicators of quality prescribing by Australian general practitioners based on Health Insurance Commission (HIC) data and assess the influence of incomplete capture of data on under-copayment drugs on the validity of these indicators.Design: Two expert groups proposed prescribing indicators that can be derived from aggregate prescribing data, and which reflect important clinical or cost-effectiveness issues. Indicators were examined using HIC data and compared with national prescribing trends over time using Australian Statistics on Medicines. The effect of incomplete data capture on indicator interpretation was examined by stratifying GPs into five strata based on the proportion of concession card holders in their practice.Participants: Approximately 14 000 Australian GPs providing ≥ 1500 Medicare services per year.Main outcome measures: Measures of prescribing for individual GPs (based on HIC data 1993–1997).Results: Forty-three potentially useful indicators were identified. These covered a fairly narrow range of prescribing activities and many required additional clinical information for interpretation. Indicators based on prescribing rates gave a misleading picture of prescribing trends where the extent of HIC data capture changed over time. Indicators expressed as ratios that reflected choice of agent within a drug class were less affected by incomplete data capture.Conclusions: Indicators of quality prescribing can be derived from HIC data. However, indicators for under-copayment drugs that represent prescribing rates may unfairly classify doctors practising in areas of socioeconomic disadvantage or high morbidity as "high prescribers". Ratio indicators are more robust, and may be more valid prescribing measures. If HIC data are to be used to monitor the quality of prescribing, data on all prescriptions dispensed will be needed.

Jane Robertson BPharm, MMedSc · Jayne L Fryer BMaths, GradDipMedStat · Dianne L O'Connell BMaths(Hons), PhD · Anthony J Smith DM, FRCP · David A Henry MB, FRCP

A growing range of infections can be safely and effectively treated with parenteral antimicrobial therapy at home, including cellulitis, pyelonephritis, pneumonia, endocarditis, osteomyelitis, septic arthritis and deep abscesses. Patients may be admitted to HITH directly from the emergency department or after a period of in-hospital care; they must be thoroughly assessed for suitability, including clinical stability and social circumstances, and both patient and carer consent must be obtained. Patients should be medically reviewed weekly at the hospital to monitor progress of therapy and check for possible complications, including adverse drug reactions. Antibiotic selection should be based on appropriate prescribing principles rather than purely dosing convenience. Innovative dosing regimens, including once-daily aminoglycosides, continuous-infusion β-lactams (eg, flucloxacillin), once- or twice-daily cephalosporins (eg, cephazolin) and oral fluoroquinolones (eg, ciprofloxacin) provide effective therapy for a wide range of infections that would have previously required in-hospital care. Appropriate use of HITH leads to improved patient and carer satisfaction, efficient in-hospital bed use and possibly some financial efficiencies.

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