Eleven years of experience with HIV infections in a general practice in Amsterdam

ORIGINAL PAPER

Eleven years of experience with HIV infections in a general practice in Amsterdam Frans J Meijman

Objectives and methods: The aim of this retrospective observational study is to describe, on the basis of patients’ records, some experiences with 65 HIV- infected patients in an inner city general practice in Amsterdam during the period 1983-1994. Results: The point prevalence of HIV-infected patients still alive at the end of the observation period was 6.9 per 1,000 listed male patients and 0.6 per 1,000 listed female patients. By then 29 AIDS cases had been registered and 19 men were known to have died (nine of them at home). Almost 50% of the patients showed no symptoms or only mild symptoms and only a minority met the criteria of AIDS at the time of the diagnosis of HIV infection. The main suspect symptoms registered before this diagnosis were persistent generalised lymphadenopathy, oral hairy leukoplakia, disseminated herpes zoster and unexplained mononucleosis syndrome. From the time AIDS was diagnosed 47% of patients who had died had survived for one year and 26% for two years. The corresponding figures for AIDS patients still alive were 60% and 30% respectively. Patients’ aversion to diagnostic and therapeutic intervention was not a trivial phenomenon. Two AIDS patients refused referral and four AIDS patients refused antiretroviral drugs persistently. Euthanasia was discussed with 40% of the patients and applied in four out of 19 patients. Conclusion: The three main stages of HIV infection present general practitioners with various diagnostic and therapeutic problems. Eur J Gen Practice, 1995; 1: 53-8.

Introduction In sharp contrast to the large numbers of publications em- anating from hospital and basic research settings concern- ing the human immunodeficiency virus (HIV) and the acquired immunodeficiency syndrome (AIDS), reports from

Frans J Meijman, general practitioner. Oude Turfmarkt 125, 101 2 GC Amsterdam, The Netherlands.

Submitted: January 20th, 1995; accepted in revised form: April 25th, 1995.

general practice are scarce. According to a Medline search performed in August 1994 most publications focus on at- titudes of general practitioners and patients, groups at risk, health promotion, the burden of care, patterns of demand for HIV tests and barriers to the provision of care by general practitioners. In a recent review it is concluded that there are still consid- erable barriers to GP’s involvement with patients with HIV and AIDS, in particular with drug users who have HIV or AIDS.’ Hardly any articles describe actual clinical experiences of doctors working with HIV-infected and AIDS patients in general practice, since almost all reports are based on questionnaire surveys or interviews. Ronald and others quantified the burden of care relating to drug use and HN infection in an inner city practice with 11,200 patients.*

They identified 432 patients who had consulted with problems of drug abuse and/or HIV infection over the period 1981-1990. Among this group of patients 161 were HIV- antibody positive. Drug abusers who were HIV-positive consulted their GP significantly more often than those who were not. An analysis of the symptoms and clinical course of (suspected) HIV infections before referral of 47 men and three women in our general practice showed that GP’s caring for patients (presumably) infected with HIV is characterised by uncertainty and varying symptoms over relatively long period^.^

It is now eleven years since the first note on the suspicion of AIDS appeared in the records of one of our patients and nine years since the first fatal case occurred in our inner city practice. We felt that at this point it might be helpful to collect and analyse some of our experiences. Although we encounter and care for increasing numbers of HIV- infected patients our practice is not one with a large pro- portion of AIDS patients, as a few other practices in Amsterdam are. Particularly in connection with the disproportional distribution of homosexual men and drug abusers over the general practices in Amsterdam HIV/AIDS problems have been concentrated in only a of practices. As in Denmark almost three quarters of Dutch general practices had neither HIV nor AIDS patients in the early ni neties, although these figures were much lower in bigger ~ i t i e s . ~ ’ ~

European Journal of General Practice, Volume 1, June 1995 53

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ORIGINAL PAPER

The aim of this study is to report: the point prevalence of HIV-infected patients and the number of deaths from AIDS on the reference date; the classifications of the infected patients at the time of the diagnosis of HIV infection, the diagnosis of AIDS and the reference date; the suspect symptoms before the HIV infection was diagnosed; the survival time after the various stages of the infection; the percentage of patients who were referred to a specialist; the percentage of patients who sought alternative therapy; the percentage of patients who (temporarely) refused to be tested for HIV, refused to be referred and/or refused treatment with antiretroviral drugs; the percentage of patients who discussed euthanasia with their GP and the number of requests granted for euthanasia; the place of death.

Quantifying the workload relating to the day-to-day care of HIV/AIDS patients is no part of this study, nor is the analysis of the contribution of home visits and out of hours contacts, since comparable data are missing with respect to the total practice population over the study period.

Methods The study covered successive HIV-infected patients who were registered up till the reference date (July lst, 1994) in the general practice affiliated to the student health service of the University of Amsterdam. Almost fifty per cent of the patients listed are not students. In this respect our practice is not comparable with the average practice in Amster- dam. In our group practice of seven GP’s (all part-timers) there is shared responsibility for patient care, although personal continuity of care is promoted, also with respect to HIV/AIDS patients. In spite of this policy only one GP cares for most HIV/AIDS patients because of personal interest and patients’ preference.

The total number of patients listed was 7,917 in 1984 and 11,773 on the reference date; by then 58% of the patients were women.

All HIV-infected patients during the study period were traced via the diagnostic record system and a separate registration file for HIV-infected patients. The combination of the two sources ensured a comprehensive collection of relevant cases. Patients with suspect symptoms only, but without a conclusively diagnosed HIV infection, were not included. This important category of patients has been studied ear lie^.^ The data were collected by a retrospective review of the patients’ records. The stages of HIV infection were defined according to the revised criteria dat- ing from 1987 and compiled by the Centers for Disease

The classification was assigned retrospectively on the basis of the available data. Only the most serious

classification code was registered. Combinations of codes were omitted. Symptoms suspect for HIV infection were divided into two groups: symptoms evidently recognised as suspect at the time of registration in the patient’s record and symptoms not recognised as suspect by the GP but being apparently suspect retrospectively. Time variables were considered in months. Patients who were diagnosed and died within one month were coded as having zero survival time. Only referrals to a specialist because of (suspected) HIV infection were taken into account. Alterna- tive therapy was defined as nonregular therapy offered by another professional and registered by the GP in the patient’s records. ‘Alternative’ self help applied by the patient in the form of vitamins was not regarded as alternative therapy. With respect to refusal by patients to accept suggested treatment ‘temporary’ refusal was defined as refusal for less than two months, ‘protracted’ refusal as refusal for more than two months but less than two years and ‘persistent’ refusal as the length of the observation period. Data were collected and analysed by hand only.

Results The study population consists of 61 men and four women

54 European Journal of General Practice, Volume 1, June 1995

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ORIGINAL PAPER

infected by HIV. The first case was diagnosed in May 1985. By the reference date 19 men were known to have died (nine of them at home and ten in hospital) and eight men were lost to follow-up. The latter have been taken into account only with respect to the data available at the time of the diagnosis of HIV infection. The point prevalence of HIV-infected patients still alive at the end of the observation period was 6.9 per 1,000 listed male patients and 0.6 per 1,000 listed female patients. In 43% of cases the HIV infection was diagnosed by the GP, in 29% by a specialist and in 28% by other providers of health care, particularly the municipal health service.

Almost 50% of the patients showed no symptoms or only mild symptoms (CDC -classification I1 and 111) and only a minority met the criteria of AIDS at the time when HIV infection was diagnosed (table 1). At the end of the observation period there were 29 AIDS cases registered (5 1 YO), including deceased patients. Pneumocystis curinii pneumonia appeared to be the main category among AIDS patients, followed by Kaposi’s sarcoma and wasting syndrome (table 2). The main suspect symptoms registered before the diagnosis of HIV infection was made appeared to be persistent generalised lymphadenopathy, oral hairy leukoplakia, disseminated herpes zoster and unexplained mononucleosis syndrome (table 3). The latter was rarely recognised as an early sign of HIV infection. As far as could be deduced from the data available, the median interval between the first suspect symptom and the diagnosis HIV infection was at least 12 months (table 4). The median interval between the first suspect symptom and the diagnosis of AIDS was 2.5 years in the case of the deceased patients and longer in the case of the AIDS patients still alive. The median survival time from the first suspect symptom until death was almost four years. In the case of the AIDS patients still alive the comparable median interval up to the reference date was 6.3 years.

At least 50% of the patients received the diagnosis of HIV infection and AIDS in the same month. The median survival time from the diagnosis of HIV infection until death was more than two years. In the case of the AIDS patients still alive the comparable median interval up to the reference date was almost two years. Regarding the HIV-infected patients without the diagnosis of AIDS this median interval was four years. The median survival time from the diagnosis of AIDS until death was one year. Regarding the patients still alive the median survival time from the diagnosis of AIDS up to the reference date was 16-21 months. Of the patients who had died 47% had survived for one year following the diagnosis of AIDS and 26% had survived two years. The corresponding figures for the AIDS patients still alive were 60 and 30%.

According to the data in the patients’ records 30% of the patients sought alternative therapy (table 5). Refusal by the patient to accept the suggested diagnostic or therapeutic procedures appeared to be most pronounced with regard to HIV testing and measurement of the T4-lymphocyte count, but 26% of the patients refused referral and 28% refused antiretroviral drugs temporarily, protractedly or persistently.

Two AIDS patients refused referral in spite of their life- threatening conditions and four AIDS patients refused antiretroviral drugs persistently. According to the data in the patients’ records 40% of the patients discussed euthanasia with there GP. The initiative to discuss the item had been taken by the patient in almost all cases. In four out of 19 deceased patients euthanasia or assisted suicide had been applied.


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ORIGINAL PAPER

Discussion This study is characterised by a retrospective observational design and inherent restricted reliability and complete- ness. Because of the single-practice research setting the study contains inevitable selection bias. Therefore the results can have only limited validity. Some conclusions, however, illustrate typical aspects of HIV infections, which are of wider interest.

The number and the prevalence of HIV-infected patients in this study may not seem particularly impressive. The prevalence, however, is similar to that of a comparable serious condition such as diabetes mellitus in the relevant age group 25-44 years and to that of the major malignant neo- plasms in the age group 45-74 Being more than two per 1,000 patients, the prevalence of HIV infections is considered high enough to regard this condition as man- ageable by the general practitioner, at least in practices such as the one under study.8 Besides, the GP’s experience with and knowledge of a disease are based only partly on indicators such as prevalence. Utilisation patterns of patients may be more important. Chronic diseases such as HIV infection are associated with only a few new episodes of illness but a high encounter rate.*q8 This high encounter rate (over many years!) may mean an emotional burden on GPs in cases of HIV infection or AIDS. For in spite of growing experience and knowledge the responsibility for the adequate management in general practice and primary care of this new disease and the support and counselling of its sufferers are characterised by trial and error, even though one endeavours to avoid such an approach.

The distribution of index diseases for AIDS in this study concurs with the trend known from the AIDS surveillance system for the Amsterdam region.’ More interesting, however, are the relatively high percentages of infected patients without any symptoms or with only mild symptoms at the time the infection was diagnosed and even at the end of the observation period (49 and 39% respectively). These patients will be increasingly underrepresented in reports from hospitals, but are an important category in general practice with respect to monitoring the course of the condition, discussing the start of diagnostic, preventive and therapeutic interventions, and counselling. This guidance given by the general practitioner ranges over many years. Table 4 shows that the median interval from the diagnosis of HIV infection up till the reference date is 46-48 months (range 4-140 months) for HIV-infected patients without AIDS.

The second interesting (and important!) category of patients encountered in general practice are those patients with suspect symptoms, but for whom - for various reasons - no HIV test is a~ailable.~ The majority of such symptoms appeared to be recognised as suspect in this study, but it may be years until the suspicion is confirmed. According to the notes in the records the decision to post- pone confirmation was usually taken by mutual agree- ment, but occasionally the general practitioner seemed to have delayed the diagnosis intentionally. These policies of postponement express the reservation about HIV testing and antiretroviral drugs among patients and their physi- cians in The Netherlands. Changing views about the bene-


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fits of some interventions - the start of prophylaxis against Pneumocystis curinii pneumonia at the right moment, for example - might eventually remove these reservations. As table 5 shows, the aversion to prophylaxis was already less than to antiretroviral drugs. The figures in table 5 also show that even after the general practitioner had aban- doned his reservations in a particular case, the aversion of patients to interventions was not a trivial phenomenon. Discussions about temporary, protracted or even persistent refusal of various interventions on the part of patients formed a substantial part of the guidance given by the general practitioner.

The third main category of HIV-infected patients in general practice are those who need terminal care. Nine out of nineteen AIDS patients in this study died at home and four of them were helped by means of euthanasia or assisted suicide. The medical care, nursing and counselling of terminal AIDS patients, their partners and friends are beyond the scope of this report, but they are part of the burden that the general practitioner and other providers of primary health care may have to bear if they have to deal with even a few AIDS patients.

Finally, a comment should be made on the duration of survival of patients after the diagnosis of AIDS. Surprisingly, the figures in this study look less favourable than the data from the AIDS-surveillance system for the Amsterdam region, which covers 975 AIDS patients diagnosed between 1982 and 1991.9 That survey shows a median survival probability for all patients that ranges from nine months

in 1982-1985, to 11 months in 1986, to 19 months in 1987 and to 26 months in 1990. In fact the 1- and 2-year survival times of the deceased AIDS patients in our study agree with the survival time of the cohort from 1986 in the large survey, whereas all AIDS patients in our study, ex- cept two, were diagnosed after 1986. Further analysis of patients' records may perhaps explain what factors have led to this relatively poor outcome. One may consider factors as patient's and doctor's delay or explicit refusal of medical treatment. Probably observer bias, diagnostic ac- curacy bias and 'lead. time' bias are responsible for the dif- ference found. For it is reasonable to assume that a re- searcher in a surveillance project will diagnose AIDS ear- lier than a physician in a clinical setting, even if both have the intention of following the same classification guidelines. In fact, these guidelines cannot cover all various pur- poses of classification." W

Acknowledgement I thank my colleagues, GPs and practice nurses, for their support and cooperation, and Mrs L Meyer-Eggerding for performing the literature search. References 1 Clarke AE. Barriers to general practitioners caring for patients with

HIV/AIDS [Review]. Furn Pruct 1993; 10: 8-13. 2 Ronald PJ, Witcomb JC, Robertson JR, Roberts JJ, Shishodia PC,

Whittaker A. Problems of drug abuse, HIV and AIDS: the burden of care in one general practice. B r ] Gen Pruct 1992; 42: 232-5. Meijman FJ. Symptomen bij vermoede en vroege stadia van HIV-in- fecties in twee Amsterdamse huisartspraktijken [Symptoms in suspected and early stages of HIV infections in two Amsterdam family practices]. Ned Tijdschr Geneeskd 1990; 134: 1405-9.

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ORIGINAL PAPER

4 Larsen JH, Lassen LC, Munster K. HIV infections and AIDS in Dan- ish general practice - the role of the GP in AIDS prevention. Sand J Prim Health Care 1990; 8: 75-9.

5. Wigersma L, Heijnen AM, Hochheimer EH, Kloosterman H. Samen- hang tussen het gebruik van nascholingsmateriaal over het humaan immunodeficientievirus en het aantal HIV-consulten in huisartspraktijken [Relationship between the use of postgraduate educational ma- terial on human immunodeficiency virus and the number of HIV con- sultations in family practice]. Ned Tijdscbr Geneeskd 1991; 135: 178- 80.

6 Centers for Disease Control. Revision of the CDC surveillance case definition for acquired immunodeficiency syndrome. MM WR 1987; 36 (SUPPI): 3-15.

7 Hoogen HJM van den, Huijgen FJA, Schellekens JWG, Straat JM, Velden HGM van der. Morbidity figures from general practice; data from four general practices 1978-1 982. Nijmegen: University Depart- ment of General Practice, 1985.

8 Lamberts H. In het huis van de huisarts [In the home of the GP]. Lelystad: Meditekst, 1991.

9 Bindels PJE, Krol A, Mulder-Folkerts DKF, Hoek JAR van der, Cou- tinho RA. De overlevingsduur van patienten na de diagnose AIDS in de regio Amsterdam, 1982-1991 [Duration of survival of patients after the diagnosis of AIDS in the Amsterdam region, 1982-19911. Ned Tijdschr Geneeskd 1994; 138: 513-8.

10 Redfield RR, Tramont EC. Toward a better classification system for HIV-infection [Editorial]. New EngJ Med 1989; 320: 1414-6.

ABSTRACT

Unrecognised human immunodeficiency virus infection in the elderly

Wafm El-Sadr, MD, MPH; James Geitler, M D

Background: Human immunodeficiency virus (HIV) infection among the elderly has not been appreciated in the United States. This is the result of their exclusion from tar- geted HIV-testing programmes and the perception that they were not at significant risk.

Methods: To assess the extent of HIV infection among elderly patients, we retrieved excess serum samples from patients 60 years or older without a history of HIV infection who died during a 1-year period at our institution. Serum samples were tested for the presence of HIV antibodies and the charts of all those found to be infected with HIV were reviewed.

Results: Thirteen (5.05%) of 257 serum samples were HIV-antibody positive. Six (6.2%) of 92 men and seven (8.9%) of 78 women between the ages of 60 and 79 years

were infected with HIV. In this group there was a trend toward more women having HIV infection. The death of none of the 13 patients with HIV infection was attribut- able to HIV infection.

Conclusion: Elderly patients from certain high HIV seroprevalence communities may be at significant risk of HIV infection. The impact of this unrecognised infection on the health, their clinical outcome, and their treatment need further evaluation. The HIV prevention and education programmes should include the elderly, and further studies of .HIV seroprevalence among this population should be supported. W

Arch Intern Med 1995; 155: 184-6.


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Eleven years of experience with HIV infections in a general practice in Amsterdam