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AIDS Care: Psychological and Sociomedical Aspects of AIDS/HIV Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/caic20

Care for AIDS patients in developing countries: a review a

D. Schopper & J. Walley

b

a

International Health Programs , Harvard School of Public Health , Boston, USA b

Swedish International Development Agency, Health Support Office , Hanoi, Van Phua, Vietnam Published online: 25 Sep 2007.

To cite this article: D. Schopper & J. Walley (1992) Care for AIDS patients in developing countries: a review, AIDS Care: Psychological and Socio-medical Aspects of AIDS/HIV, 4:1, 89-102, DOI: 10.1080/09540129208251623 To link to this article: http://dx.doi.org/10.1080/09540129208251623

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AIDS CARE, VOL. 4, NO. 1, 1992

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Care for AIDS patients in developing countries: a review

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D. SCHOPPER & J. WALLEY' International Health Programs, Harvard School of Public Health, Boston, USA and 'Swedish International Development Agency, Health Support Ofice, Van Phua, Hanoi, Vietnam

Abstract As an ever increasing number of HIV-infected persons develop AIDS, treating the manifestations associated with HIV infection has become a new challenge to health sectors in developing countries. Given resource constraints of health systems before the AIDS epidemic, there is an urgent need to start examining ways in which health care can be delivered to the large number of AIDS patients, without infinging on other p r i m a v health care activities. This paper reviews current experience with AIDS patient care management in developing countries and determines some of the areas where further research is crucial. The main issues identifed are: (1) that reliable data on standardized treatment schemesfor AIDS patients are scarce; (2) that there is an urgent need for research on low-cost supportive treatment of AIDS patients, comparing costs and outcomes; (3) that outpatient and home-based care can be a valuable alternative to hospital-based care, but that cost-efficiency of these alternative treatment strategies should be examined more closely; and jnally, that (4) the potential benefit of using HIV/AIDS patients to promote prevention of HIV transmission should be acknowledged. Introduction In the first years after the discovery of the acquired immonodeficiency syndrome (AIDS), control efforts were focused mainly on reducing transmission of the human immunodeficiency virus (HIV). Human and financial resources were mobilized worldwide in an attempt to halt the epidemic. Research efforts were aimed at understanding the biological mechanisms involved and the ways of preventing transmission of the disease. However, as an ever increasing number of HIV-infected persons develop AIDS, treating the manifestations associated with HIV infection has become a new challenge. A considerable body of literature exists on medical management and care for AIDS patients in industralized countries. Most of this information, however, may not be directly applicable to the situation in developing countries. Two factors support this: (1) expression of the disease varies between regions and the prevalence of opportunistic infections differs; and, (2) resources available for treatment and care for AIDS patients are considerably less. In most developing countries the health sector has suffered from limited budgets and lack of

Address for correspondence: Dr Doris Schopper, International Health Programs, Harvard School of Public Health, 677 Huntington Avenue, Boston, MA 02115, USA.

90 D. SCHOPPER & J. WALLEY trained personnel prior to the AIDS epidemic, constraining the broad implementation of primary health care strategies. The additional patient load brought about by HIVIAIDS will impose an even heavier burden on already finite resources in most health sectors. Given this reality, determining appropriate txeatment strategies for local conditions becomes increasingly important. This paper attempts to review current experience with AIDS patient care management in developing countries and to determine some of the areas where further research is crucial.

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Magnitude of the problem As of July 1991 a global total of more than 371,000 cases of AIDS have been reported worldwide (WHO/GPA/SFI, 1991a). However, taking into account under-diagnosis, underreporting and delay in reporting it is estimated that more than one million AIDS cases may have developed among adults worldwide to date (WHO/GPA/SFI, 1991b). Since the beginning of the pandemic at least 8-10 million HIV infections are estimated to have occurred in adults, and about one million children are estimated to have been born infected with HIV. Most of these people will eventually develop AIDS. Recently the World Health Organization (WHO) applied a Delphi method* to project HIV prevalence and AIDS incidence for the period 1988 to mid-2000 (Chin et al., 1990). The cumulative number of adult AIDS cases projected by the year 2000 is between 5 and 6 million. Even when asked to take into account a concerted global effort for prevention of the disease, Delphi participants expected that less than half of the projected future AIDS cases would be preventable. For the year 1988 a global total of 90,000 AIDS cases was estimated. Even with a continued global effort, the annual incidence of AIDS cases was projected to be about 450,000 in 1995 and 600,000 in the year 2000. The majority of AIDS cases reported have occurred in the African and American regions (85% of total AIDS cases reported). These regions expected a threefold increase in cumulative cases during the period mid-1988 to the end of 1991. Asia had to expect a tenfold increase in AIDS cases during the same period because the AIDS epidemic is still at a very early stage when doubling time for AIDS cases is much shorter than in later phases of the epidemic. The 10 African countries which have reported the highest number of AIDS cases have diagnosed over 82,000 cases to date, representing 89% of all cases declared in the African region (WHO/GPA/SFI, 1991a). According to WHO 1989 projections and taking into account under-reporting, these 10 countries alone can expect as many as 315,000 surviving adult AIDS patients in 1992 (WHO/GPA/SFI, 1989). In addition, these countries may have to care for almost 60,000 children suffering from AIDS in that same year. In Uganda and Zambia, the death rate attributable to AIDS in the adult population will increase from about 5/1000 in 1990 to 14/1000 in 1995. During these 5 years about 450,000 adults will die of AIDS in Uganda, and about 234,000 in Zambia. Most of these highly impacted countries already face difficult choices in dealing with the increasing number of AIDS patients. Even those countries that have reported few AIDS cases will have to decide about the treatment and support to be provided to AIDS patients in the future. The current and future impact of the AIDS epidemic on health care systems will * The Delphi method attempts to improve the quality of judgments needed in relatively uncertain situations. A group of experts are identified and asked to respond to a questionnaire. An analysis of these responses are distributed to the participants. In search of a consensus, they are asked to complete a repeat questionnaire after being informed of the results of the first survey.

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depend, to a great extent, on the strength of existing health services, the resources available in the health sector and the type of care provided to AIDS patients. Available information on current care practices is briefly summarized in the next section before reviewing evidence on the possible impact of AIDS on health care systems.

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Current care practices

There is a wide body of research on treatment and care for people with AIDS in developing countries but little information is available from developing countries. Treatments proposed for developed countries may not be applicable due to the cost of therapy and the different opportunistic infections prevalent in developing countries. We reviewed the literature and divided it into four sections: clinical management; nursing and palliative care; counselling, and support.

Clinical management Clinical management of AIDS patients includes all diagnostic procedures and drugs provided for the treatment of specific HIV-related infections.

Diagnosis. Diagnosis of AIDS in developing countries is based on the WHO diagnostic criteria (Colebunders et al., 1987) or on the CDC (CDC, 1987) criteria which includes confirmatory HIV testing. In those African countries where prevalence of the disease is already high, and where testing for HIV is not available for routine use due to cost, diagnosis can be made with confidence using solely clinical criteria (Widy-Wirsky et al., 1988). Diagnosis of some opportunistic infections can be ascertained by simple microscopic examination. However, other opportunistic infections can only be detected using more difficult and expensive procedures, such as biochemical tests, cultures, serologic tests, biopsies, endoscopies and X-ray examinations, including CT-scans. The cost-effectiveness, in developing countries, of these procedures in diagnosing AIDS and related infections should be studied. In addition, their relevance with regard to therapeutic choices should be examined, and diagnostic guidelines should be established and evaluated. Antiretroviral treatment. The use of AZT (Zidovudine) in developed countries has been shown to prolong life for several months (Volberding et al., 1990). However, limited accessibility, the need for elaborate patient monitoring due to drug toxicity and particularly high cost limit the usefulness of antiretroviral treatment in developing countries (Sewankambo, 1989). To date there are no reports in the literature of clinical trials involving antiretroviral use in developing countries. An assessment of the costs involved of using AZT to treat people with AIDS, and those with asymptomatic HIV infection, was conducted in Latin America. The estimated costs for AZT provision to symptomatic persons was about US$ 22.5 million and for all people with HIV US$ 200 million. This compares with present national AIDS Programmes expenditure of US$ 12.9 million in this region (Kimball et al., 1990). Treatment of opportunistic infections. Many health workers, even in high prevalence countries, have not received training in the clinical management of .AIDS. The WHO is developing generic clinical management guidelines for adults and chikdren, for self-instruc-

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tion and training of clinicians (WHO/GPA, 1990a). The guidelines are symptom-based and use flow-chart algorithms which are segmented into three levels, based on the availability of diagnostic facilities. These guidelines are adaptable to country-specific situations. The majority of countries have not, as yet, developed standard treatment schedules for the management of AIDS patients. Experience in Uganda suggests that with the use of nine relatively inexpensive drugs plus antituberculosis chemotherapy, a high degree of palliation can be achieved for many patients with AIDS. The drugs-cotrimoxazole, metronidazole, ketoconazole, chlorpromazine, chloroquine, aspirin or acetaminophen, codeine, calamine lotion, and petroleum jelly-were chosen on the basis of cost, efficacy, and suitability for multiple uses (Katabira & Goodgame, 1989). However the impact of these guidelines on patient care has not been formally evaluated and are not yet being used countrywide. The spectrum of opportunistic infections reflects the prevalence of specific pathogens in the local environment. For example, pneumocystis carinii pneumonia which is a major problem in the USA and Europe, has not been identified as a cause of pulmonary disease in Uganda (Serwadda et al., 1989). In contrast, tuberculosis, mainly reactivation of latent infections, is a major problem in developing countries. In the rural hospitals in one region of Tanzania, 10-15% of the in-patients were being treated for tuberculosis, 50% of whom were HIV-infected (F. Sonnenburg, personal communication). More studies are needed to set priorities for treatment of opportunistic infections, taking into account survival time, quality of survival, impact on the general population (e.g. the risk of spread of turberculosis), and the availability of resources. Where clinical guidelines exist and are being implemented, a formal evaluation of these guidelines would be valuable.

Prevention of opportunistic infections. It has been advocated that the reactivation of tuberculosis in dually infected (Tb/HIV) people can be prevented through chemotherapy (Editorial, 1990). The efficacy of preventive chemotherapy has previously been established in numerous controlled trials in a wide variety of HIV-free populations in many countries (WHO/TUB/GPA, 1990). In the USA, isoniazid preventive chemotherapy has been recommended for use by individuals who are HIV-infected and have a reactive tuberculin test (CDC, 1989). In Zambia, a 6 month course of Isoniazid chemotherapy was given to patients with both HIV infection and inactive tuberculosis. Incidence of turberculosis was significantly reduced in these patients as compared to controls (Wadhawan et al., 1990). The demand for services to treat acute tuberculosis cases is straining already limited resources. Preventive chemotherapy could be a cost-effective approach as compared to treating AIDS patients with clinically active tuberculosis (Pinching, 1988). There are, however, a number of unresolved problems, in particular drug resistance, hypersensitivity, treatment compliance, logistic difficulties, and cost. For example, in Uganda, 1 million people, in an adult population of 10 million, have been estimated to be HIV-seropositive. Treatment with isoniazid for these people would be an immense task both logistically and financially (Goodgame 1990). Clinical trials are ongoing or planned to investigate the efficacy of various preventive tuberculosis chemotherapies in 10 developing countries (WHO/TUB/AIDS, 1990). Also, a protocol for operational studies to assess the feasibility of implementation, including compliance and cost, has been prepared (Eriki et al., 1990). In addition to examining the prevention of tuberculosis, there may be other prophylactic measures that could be investigated, such as weekly pyrimethamine against malaria, toxoplasma and isosporiasis (Goodgame, 1990).

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Nursing and palliative care Nursing and palliative care for people with AIDS has much in common with other diseases. The overall goal is to relieve symptoms and maximize quality of life. In an attempt to integrate HIV information into the formal and continuing education of nursing personnel, WHO together with the International Council of Nurses have prepared guidelines for nursing management of people with HIV. These have been translated into many languages and have been adapted to country-specific environments (WHO/International Council of Nurses, 1988). The WHO Regional Office for the Western Pacific has published a reference library for nurses, which includes guidelines for nursing care of AIDS patients. This material is being used throughout the region and is being adapted by other regions (WHO/Western Pacific, 1990). No published studies on nursing and palliative care for AIDS patients could be identified. Planned research regarding care for AIDS patients includes a study into the impact of AIDS on the nursing profession in Zambia (Ndulo et al., 1990) and multi-centre studies of HIV transmission to midwives (Fosi-Mbantenkhu et al., 1990) and in paediatric ward settings Nathoo et a1 1990) in a number of African countries. There is a need for operational research on the nursing and palliative care of adult and paediatric AIDS patients. The training needs for nurses involved in AIDS patient care should be determined in specific settings and according to the level of training. In addition, the psychological support needed to help them cope with the stresses of caring for AIDS patients should be examined (S. Anderson & B. Sylvest-Hansen, personal communication).

Counselling Counselling is being increasingly recognized as an important component of the care provided to people with AIDS (Carballo & Miller, 1989). Counselling of people with HIVIAIDS includes both preventive and supportive components, which are complementary to each other. Further transmission of HIV can only be avoided if those who are diagnosed with HIV infection or AIDS are provided the necessary information and support. Few studies have been published describing or evaluating counselling for people with HIV/AIDS in developing countries. At the University Teaching Hospital in Lusaka, Zambia, counselling was said to be effective in enhancing coping skills, promoting decision making, and in improving interpersonal relationships (Peltzer et LzZ., 1986). However, no data have been provided to substantiate these results. In Chikankata Hospital, Zambia, counselling provides patients with information and support. In addition, it is building a system of shared responsibility for care within the family and community. Patient response to counselling has been positive. A total of 70 out of 74 adult patients counselled during 1987 were willing to share the diagnosis with a relative, who then acted as a link to the rest of the family network by providing information and demonstrating support for the patient (Chaava, 1990). Generally, counselling is conducted by health workers, but there is also a role for volunteer counsellors (Miller, 1989). The AIDS Service Organization (TASO) of Uganda operates a well known and respected peer group counselling and support service. Their emphasis is on ‘living positively with AIDS’ (Hampton, 1990). WHO has recently produced guidelines on counselling people .with HIV (WHOIGPA, 1990b). If counselling is to be effectively supported and implemented, issues which need to be addressed include: defining the objectives of counselling; assessing the effectiveness of various counselling approaches; providing counselling as an integral part of health care services and how it is to be integrated with existing tasks; identifying innovative approaches

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to cope with staffing shortage; providing peer support to deal with the ‘burnout’ syndrome; and, meeting the need for confidentiality in community settings (Carballo & Miller, 1989).

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Support The family members of AIDS patients also need support. They may need assistance in dealing with the unfounded fear that HIV transmission is possible through household contact and caring for infected individuals, information on how to care for family members with AIDS and practical support for carrying out the additional workload (Sewankambo, 1989). TASO, in Uganda, operates a day centre where clients and their families meet to share information and express their feelings. Home visiting is said to enable the counsellors to assess and discuss the client’s social and economic situation. It also helps to break down the sense of isolation experienced by many people with HIV and AIDS. Many families also need economic assistance, which is not easy to provide, especially in countries with limited economic resources. The TASO centre, for example, is equipped with sewing machines which clients use to make clothes for sale (Hampton, 1990). One of the most agonizing worries of people with AIDS is the fate of their children when they are too ill to work and when they die. In Africa, especially in the rural areas, the extended family provides a resilient social institution, and, even in urban areas, the family retains much of its cohesive power (Chaava, 1990). The Save the Children Fund (UK) enumeration study in Uganda (Hunter, 1990) found that extended family networks are trying to absorb AIDS orphans according to traditional rules. However, these children are vulnerable to increased mortality due to economic and health stresses on their caretakers, many of whom are elderly. Guardians considered school fees, health facilities, clothing, blankets and bedding, and food the orphans’ greatest unmet needs. Issues related to support for AIDS orphans must be addressed to help ensure that social structures will maintain their integrity (Ouattara & Cole-King, 1990). The World Bank and World Health Organization are currently investigating these issues in Tanzania, as part of a larger study of cost-effective options for dealing with AIDS (Bertozzi et al., 1990a). For convenience this review of current experiences with care for AIDS patients has been divided into four major areas. It should be stressed, however, that AIDS patient management should, and generally does, integrate several of these approaches.

Impact on the health system Adult and paediatric AIDS cases add to the already large patient load of health care systems in developing countries. AIDS, a relatively new disease, is not replacing any other pathology. Instead, it increases the number of cases of treatable diseases and adds cases of opportunistic infections rarely encountered before. There may be big differences in the ability of health systems to cope with this increased patient load.

Health services utilization It can be expected that the increasing number of AIDS patients, particularly in sub-Saharan Africa, will be paralleled by a high utilization rate of available health services. This was recently documented in the main hospital in Kinshasa, Zaire, where 27% of patients admitted in the internal medicine ward had AIDS. AIDS was the leading cause for hospitalization and in-hospital mortality in the medical wards in that hospital (Kapita et al., 1990).

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In the rural hospitals of one region in Tanzania, 6% of all adult inpatients were identified as AIDS cases (F. Sonnenburg, personal communication). The percentage of adult mortality attributable to AIDS increased from 8% in 1986 to 44% in 1990 in the same region. In a survey of inpatients and outpatients at 15 hospitals throughout Uganda in 1987, 42% of all patients tested HIV-positive, and of these, 80% presented symptoms of clinical AIDS (Berkley et al., 1990). In 1989, AIDS patients occupied 30% of all beds in medical wards (Ministry of Health, Uganda, 1989). The health care consumption by HIV infected bank employees in Kinshasa was found considerably higher in comparison to matched non-infected controls. Outpatient visits increased by 34% and days hospitalized by 50 times (Ntumbanzondo et al., 1990). These studies document the additional strain imposed on in-patient and out-patient services by the AIDS epidemic. In those countries where the epidemic started later, particularly in the Asian region, the impact on health services utilization has not yet been experienced. However a similar impact is expected in the future. The studies mentioned above have only examined the proportion of health services provided to HIV infected and AIDS patients. For planning purposes, however, it would also be useful to obtain precise information on the life-time consumption of health services by HIV infected persons and AIDS patients. This should include the average number of hospitalization episodes, days of hospitalization and number of out-patient visits each HIV infected person will necessitate during his or her remaining life-time.

Human resources Human resources needed for the management of AIDS patients will largely depend on the structure of the existing health system (eg. emphasis on primary care delivery versus tertiary care) and on the type of care provided to AIDS patients. Personnel needs will be different if counselling is a major part of AIDS patient care, or if specialized clinical treatment is the main emphasis. It is likely that in those countries most affected by the AIDS epidemic the number of staff working in health care delivery will have to be increased. However, it is not apparent which type of staff will be most needed in which settings. A recent study in one hospital in Mexico showed that medical services to AIDS patients were mainly provided by nurses and technicians. Physicians spent less time with patients than expected (Tapia-Conyer et al., 1990a). It is not clear if this reflects true needs or if physicians were not able to spend more time with patients due to increased demands on their time. Information on manpower needs associated with care of AIDS patients is essential. It would be particularly important to examine which health care providers could meet the needs of AIDS patients in the most efficient and cost-effective manner. Adequate staffing and training could thus be planned according to the number of AIDS cases expected.

Drugs It can be expected that the consumption of drugs will increase as the number of AIDS patients rises. However, few studies have thoroughly documented the impact of AIDS on drug use and availability. In the study of 90 HIV-positive bank employees in Kinshasa mentioned earlier (Ntumbanzondo ef al., 1990), a 31% increase in total use of medication as compared to

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96 D. SCHOPPER a! J. WALLEY HIV-negative employees was described. Consumption of antidiarrheals increased almost threefold, while use of antibiotics rose by 160%. Future drug needs for treatment of AIDS patients were estimated in Malawi (C. Lissner, personal communication). With a simplified clinical treatment scheme (excluding three expensive drugs, acyclovir, amphotericin B and ketoconazole) drug costs per episode of illness were estimated to lie between US$4 to US$9. Anti-tuberculosis drugs, including streptomycin, pyrazinamid, isoniazid and rifampicin would account for over half of these expenditures. Annual per case costs would be between US$12 and US$38. This should be compared to current annual per capita drug expenditure by the Ministry of Health of US$O.l8. Similarly, the Ministry of Health in Zambia estimates that due to the AIDS epidemic demand for some anti-tuberculosis drugs (rifampicin, pyrazinamid, streptomycin) will increase by 60% between 1988 and 1991 (R. Wabitsch, personal communication). Providing these additional drugs will be very costly. Overall drug cost per admission for an HIVpositive patient was estimated to be about US$7, as compared to a current annual per capita expenditure on drugs of US$3. Current treatment practices for AIDS patients were examined at one hospital in Bangkok, Thailand (D. Schopper, personal communication). During 39 hospitalizations, drugs for AIDS patients cost on average US$109. However, AZT accounted for 67% and amphotericin B for 12% of overall drug costs. By comparison, anti-tuberculosis treatment represented only 3% of total drug costs, due to the relatively high cost of AZT and amphotericin B. Countries facing an increasing number of AIDS patients should project future drug needs and make an attempt to regulate use of drugs according to available resources. A guide to this decision-making process (Laing, 1990) and a computer programme to estimate future drug needs and costs (WHOIGPA and DAP, 1990) is being developed by GPAIWHO. These may be useful tools for studying the impact of the AIDS epidemic on drug needs, use and availability in developing countries. Cost of care

The cost of drugs as discussed above are only one component of the overall cost of care for AIDS patients. To examine the impact of AIDS on the health system, it is crucial to estimate the total cost of care for AIDS patients, including costs of drugs, procedures, labour and routine services. Costs related to the treatment of AIDS patients have mainly been examined in developed countries (Drummond & Davies, 1988). However, some studies have been conducted in developing countries, providing estimates of individual treatment costs per episode of HIV-related illness, as well as overall life-time cost of an AIDS patient. Further on, the impact of AIDS on health care budgets have been estimated in specific settings. Given the great disparity of resources in developing countries, it is difficult to compare costs for treatment of AIDS patients between countries. However, there seems to be a positive relationship between estimated treatment costs in different countries and per capita GNP (Scitovsky & Over, 1988). The medical care cost per episode of hospitalization was examined in 22 AIDS patients in Thailand, and was estimated to be on average about US$140. This included only drugs and medical procedures, but no labour costs. Cost per episode for non-AIDS patients in the same hospital was about US$30. The large increase in cost for AIDS patients was mainly due to longer hospital stays: 5.4 days for non-AIDS patients vs 24 days for AIDS patients (C. Cameron, personal communication).

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In Mexico it was estimated that the total annual cost per AIDS patient represented 40 times the per capita gross national product (GNP) in 1988 (Tapia-Conyer, 1990b). Estimates based on prevalence of AIDS show that direct treatment costs for AIDS patients represents between 0.5 and 0.8% of the total health budget in 1988. The overall life-time direct cost of care per person with AIDS in San Juan, Puerto Rico, ranged from US$10,733 for those treated in a public hospital not receiving AZT to US$51,842 for private patients receiving AZT (Shepard et al., 1990). The low estimate of direct costs is 4.2 times the per capital GNP of US$5,600. Hospital costs for AIDS patients in Brazil were estimated to be about US$21,500 per year (Cordeiro, 1988). This analysis includes recurrent and capital costs. When comparing the high treatment costs for AIDS patients in Brazil and Puerto Rico to those of other developing countries the relatively high GNP of these two countries should be taken into consideration. In the only published study using data from sub-Saharan Africa, the direct and indirect costs related to HIV infection in Zaire and Tanzania were estimated (Over et al., 1988). In Zaire the direct cost of medical care over the life-time of an HIV-infected person ranged from US$132 to US$1,585. In Tanzania estimated direct cost ranges from US$104 to US$631. The low estimate is distinguished from the high estimate in each country by differences in the characteristics of the patient and the health care options (e.g. public rural health clinics vs private urban health care) available to the patient. These costs compare to a GNP per capita of US$170 in Zaire and U S 2 9 0 in Tanzania. The above mentioned studies also show that health care costs for AIDS generally exceed per capita GNP and are large when compared to per capita health expenditures. Expenditures for AIDS treatment, however, may not greatly exceed those for other serious diseases of adults, e.g. cancer, in the same countries. Unfortunately, there are no data available to test this hypothesis. None of the data yet published allow for sound estimates of current and future medical care costs associated with HIV infection. More studies are needed to gather reliable data on cost issues related to HIV-infected persons and AIDS patients (Over et al., 1989). These costs should be compared to per patient expenditures for other diseases.

Financial resources The manner in which AIDS patient care is financed will determine availability of services, efficiency of service delivery, foreign exchange needs, local costs, and programme sustainability. It thus is crucial to specify how needed resources can be funded and how various financing mechanisms will impact on AIDS patient care in particular, and overall health care in general. Possible financing mechanisms include government funding, bilateral donors, international organizations, fee-for-service, insurance reimbursement, families of patients etc. Financing AIDS patient care will necessarily be tied to the financing mechanisms of the general health care system. At present, little information is available on financing of health care and its impact on care provided for AIDS patients in developing countries. Cost recovery as a possible financing mechanism for AIDS patient care was explored in a study in a rural hospital in Zaire. It appeared that the admission of HIV-positive patients actually improved cost recovery (Bertozzi et al., 1990b). These patients, on average younger and more likely to be company employees, had health insurance and were paying higher charges than other admissions without insurance. This example is probably limited in its

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98 D. SCHOPPER & J. WALLEY applicability to most other settings. In regions where AIDS patients have a comparable or lower income than the general population and were the economic and social impact of the epidemic is already noticeable, cost-recovery may be difficult or impossible. Financing of care by HIV-infected persons themselves and their families was examined at Mama Yemo hospital in Kinshasa, Zaire (Hassig et al., 1990). Prior to their admission HIV-infected patients had spent twice as much on treatment as HIV-uninfected: US$109 versus US$54. In addition, 64% of HIV-infected patients had lost their job as compared to 44% of HIV-uninfected patients. The authors of this study concluded that HIV infection places a heavy financial burden on infected individuals and their families. Even if minimal care is provided for AIDS patients, the impact on financial resouces could be dramatic. It is important to explicitly recognize the limits of existing resources in the health sector in dealing with the AIDS epidemic. Ways in which the care of AIDS patients can be financed and how this will influence health care delivery have to be examined further.

Exploring care strategies

Two commonly cited alternatives to in-patient treatment are outpatient and home-based care. They may help to reduce demand for hospital services and overall cost of care for AIDS patients. However, they require a well functioning referral system and a supportive family structure. At present, little information exists on the successes and pitfalls of outpatient clinics and home-care programmes for HIV infected and AIDS patients in developing countries. We briefly review current experience.

Specialized outpatient clinic An outpatient clinic for AIDS patients was set up in a government hospital in Kampala, Uganda, in 1987 (Katabira, 1989). The objective was to follow up HIV-infected people and offer them treatment and counselling services. During the first 2 years about 800 HIVinfected persons have been seen. Survival time of the patients after onset of symptoms was on average 71 weeks. According to the author, survival time could be improved further by increasing clinical treatment and counselling services. The impact of this clinic on demand for hospitalization, quality of care and survival has not been quantified. Patient satisfaction was examined in a specialized outpatient care facility in San Juan, Puerto Rico (Benitez et al., 1989). More than 90% of the 60 patients interviewed at random, were satisfied with the treatment received and quality of service. Over 80%felt confidentiality was assured and evaluated personnel as qualified in AIDS care. In addition, 53% felt less anxious about their future since visiting the clinic. No data was provided on the effectiveness and cost of this type of care as compared to regular health services. The effect of outpatient and home-based care on hospitalization of AIDS patients was examined in the same setting in Puerto Rico, before and after the introduction of a comprehensive care system (Kouri, 1990). Average length of stay in hospital of AIDS patients declined from 21.5 days in 1987 to 11.3 days in 1988. Overall inpatient care accounted only for 36% of care costs after introducing the comprehensive care system. However it is not clear if total costs of treatment for AIDS patients have been reduced by the intervention. Experience from other areas of health care has shown that the cost of delivering the

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same medical or surgical care is considerably less in an outpatient facility than in an inpatient service. This could suggest that specialized outpatient clinics may well prove to be a cost-effective means of treating AIDS patients. However out-patient services have to be of good quality in order to satisfy the needs of AIDS patients and prevent unnecessary hospitalizations. The main impact of outpatient care may be through early diagnosis and treatment of opportunistic infections and on-going counselling and support of patients and their families. More information is needed, however, on the effects of outpatient clinics in order to decide which type of services are to be provided and how this will affect existing staffing, equipment and financial resources.

Home-based care Community or home-based care has been proposed as another major and effective way to address the needs of AIDS patients and to reduce health care costs. Recently six home-based care programmes were reviewed in Uganda and Zambia (Westphal, 1990). All of these programmes were developed by non-governmental organizations and funded by foreign donors. The impact of home-based care on the quality of life for AIDS patients, the demand for in-patient care and the overall cost of care were examined. This case study seems to confirm the assumption that home-based care can improve the quality of life for the AIDS patient. However, it was not possible to quantify the number of health problems prevented or alleviated. It also confirmed that patients generally prefer to die at home. Decreased demand for inpatient services was only documented in one project. At Chikankata hospital, in Zambia, it was estimated that 35 hospital admissions had been prevented during 1988, and that the average length of stay for HIV-infected persons had decreased from 32 days to 16 days after the introduction of home-based care. Financial efficiency was quantified only at Chikankata. Initially, 38 home visits were provided per month at a cost of U S 4 6 per visit. Later on, as the number of visits increased, cost per visit dropped to US$12. A hospital day cost about US$5 and one hospitalization for an AIDS patient cost between US$80 and US$160. Consequently, the costs of all home visits in 1988 were less than the costs of the hospital admissions that would have occurred in the absence of the home-based care programme. Malawi is developing a systematic approach to home-based care that aims to link formal district health services and community health workers to provide care and support for persons with AIDS and their families. This approach will involve training health personnel in discharge planning, referral and follow-up (Schietinger & Walley, 1990). At present experience with home-based care programmes is limited (Williams, 1990; Hampton, 1990). The few studies discussed here are of limited value as they have been defined within themselves, and do not allow for more general conclusions on the effectiveness of home-based care. It thus appears that the usefulness and appropriateness of homebased care for AIDS patients has to be examined further. The additional resources needed to establish such programmes must be estimated, and the relative cost-effectiveness of this care approach as compared to hospital-based care should be analysed. It should be noted, however, that home-based care cannot replace in-patient or outpatient services and must be part of a reasonably well functioning health care system (Campbell & Williams, 1990). Home-based care also requires a supportive family environment and as more family members become ill with AIDS, provision of care at home may no longer be possible.

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Conclusion

A large number of AIDS cases can be expected in most developing countries even if future HIV transmission is considerably reduced. Given resource constraints of health systems before the AIDS epidemic, there is an urgent need to start examining ways in which health care can be delivered to the large number of AIDS patients, without infringing on other primary health care activities. This review of current activities aimed at the analysis and evaluation of possible care strategies for AIDS patients in developing countries highlights several issues. ( 1 ) Some countries have established standardized treatment schemes for AIDS patients, exploring alternative care strategies and looking at the impact of AIDS on the health care system. However, reliable data is scarce. (2) At present, neither adequate treatment for the prevention of AIDS in HIV infected individuals, nor cure for the disease is available. Existing expensive supportive treatments, which may increase the life-span of AIDS patients, are not relevant for most developing countries. There is an urgent need for research on low-cost supportive treatment of AIDS patients, comparing costs and outcomes given local constraints. This research should include defining complications of the disease which should be treated (e.g. tuberculosis, candidiasis, chronic diarrhoea) and developing and evaluating appropriate treatment protocols. (3) Out-patient clinics and home-based care have been proposed as effective means of increasing the quality of care and reducing costs. To date, most of these programmes have been developed at the local level by non governmental organizations with external funding. Further research is needed to develop approaches that are effective, sustainable and replicable within the formal health sector at the national level. Cost-efficiency of these comprehensive treatment strategies should be examined more closely. (4) Finally, the potential benefit of using HIV/AIDS patient care to promote prevention of HIV transmission should be acknowledged and examined. The presence of an AIDS patient in a family or a community makes those not yet affected by the disease more susceptible to listen to and act upon preventive messages. Therefore, opportunities in the health care system to promote behaviour change for HIV avoidance and to raise awareness about HIVIAIDS to avert inappropriate responses to the disease should be identified. This review of AIDS patient care in developing countries has revealed that little information exists on the costs and benefits of different interventions for HIV/AIDS patients. This presents difficulties for policy makers, planners and donors who need to make informed choices among various care strategies. If the degradation, and ultimately collapse, of already fragile health care systems is to be avoided, the international community must join in a concerted effort not only to carry out the essential research, but also to provide technical expertise and financial support to those countries most affected by the epidemic. Acknowledgements We would like to thank all our friends and colleagues who helped us with their ideas and critical comments. We are particularly indebted to Roy Widdus and Charlie Cameron for their never failing support and encouragement. References BENITEZ,R. er al. (1989) A comprehensive and cost-effective approach to the management of AIDS patients in an outpatient care facility: the results of a patient survey, 5th International Conference on AIDS, Montreal.

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