Family Practice Vol. 17, No. 4, 288-292
© Oxford University Press 2000
Primary care involvement in human immune deficiency virus infection—a pan-European view
a Department of Genitourinary and HIV Medicine, St Mary's Hospital, London, UK,
b Institute of Tropical Medicine, Antwerp, Belgium,
c LMU München, Klinikum Innenstadt, München, Germany and
d First Department of Medicine, General Hospital of Athens, Greece.
R Colebunders, Institute of Tropical Medicine, Nationalestraat 155, 2000 Antwerpen, Belgium.
Tomlinson DR, Colebunders R, Coppieters Y, Dreezen C, Andraghetti R, Fleerackers Y, Liess H, Kosmidis J and the Eurosupport Study Group. Primary care involvement in human immune deficiency virus infection—a pan-European view. Family Practice 2000; 17: 288–292.
Received 2 July 1999; Revised 14 February 2000; Accepted 13 March 2000.
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Abstract |
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Objective. The aim of this study was to compare the primary care experiences of human immunodeficiency virus (HIV)-positive individuals across Europe.
Methods.An anonymous self-administered questionnaire study was carried out between August 1996 and August 1997. A total of 15 HIV/AIDS treatment centres and 14 HIV support organizations in 11 European countries participated in the distribution of questionnaires. Overall, 1366 completed questionnaires were included in the analysis from a total of 2751 distributed (50% response rate). The majority of respondents were homosexual men (53.6%), and 54.2% had AIDS or symptomatic HIV disease. The main outcome measures were use of GP services in the preceding 6 months, GP involvement in HIV care provision, satisfaction with current service provision and reasons for non-involvement of the primary care services.
Results. Most patients (64.8%) had visited their GP at least once in the preceding 6 months, but 53.9% of respondents reported that their GP was not involved in their HIV care. Of these patients, 53.4% would like their GP to be involved. Patients from central European countries were more likely to have seen their GP than their counterparts from northern and southern countries (P < 0.005), and were less worried that the GP would not have enough knowledge about HIV (P = 0.002) or would not be sympathetic (P = 0.052).
Conclusions.There are clear differences in GP utilization by HIV-positive individuals across Europe, reflecting in part local service provision but primarily patients' attitudes and beliefs. Strategies to promote the involvement of primary health care services need to address patients' core beliefs, if these are to be changed.
Keywords. Europe, HIV, primary care.
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Introduction |
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A multi-centre pan-European initiative to look at the care experiences of patients with human immunodeficiency virus (HIV) since their initial diagnosis was undertaken in order to provide a baseline assessment of current HIV service provision across Europe. This report concentrates on the utilization of primary health care services by HIV-positive patients. Most reported studies have collected data from the primary health care physicians, and not their patients,1,2 and may not reflect the true consultation pattern as many patients choose not to disclose their HIV status to the primary care team.3
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Methods |
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As part of the ‘Eurosupport I’ initiative, a total of 2750 self-administered questionnaires were distributed between August 1996 and August 1997 via HIV treatment centres and HIV support organizations (NGOs) in 11 European countries Belgium (Antwerp and Brussels), Denmark (Copenhagen), France (13 localities), Germany (München), Greece (Athens), Italy (Milan and Rome), Luxembourg, Portugal (Lisbon), Spain (Barcelona and La Coruña), The Netherlands (Utrecht) and the UK (London and Manchester). Participating HIV treatment centres and NGOs had a particular interest in the project and were not chosen randomly.
The response rate was 50%, ranging from 35% (194 responses) from the UK to 89% (100 responses) from France, and a total of 1366 patients were included in the analysis. Overall, 80% of the returned questionnaires had been given to patients at their treatment centre and 20% distributed by a support or other non-statutory organization. For the purpose of analysis by geographic area, countries were divided into three major regions: north (Denmark, UK and The Netherlands), central (Luxembourg, France, Belgium and Germany) and south (Greece, Italy, Portugal and Spain).
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Results |
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The 1366 patients represented 0.8% of the total number of cases of HIV infection reported to the World Health Organization from the participating countries.4 Table 1
shows that most respondents were male (north 89%, 3161/355; south 73.4%, 435/593). In Luxembourg, Belgium, Greece and Italy, 11–18% of male respondents believed that they had acquired HIV through heterosexual contact compared with 2–7% from all other countries. Likewise, a large number of respondents from Italy, Portugal and Spain reported i.v. drug use as their risk behaviour (24–48%) compared with other countries (1–19%).
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GP utilization
Reported rates of GP utilization were high overall (Table 2
), with 65% (817/1260) of respondents having visited their GP at least once in the preceding 6 months, although 53.9% (727/1348) said that their GP was not involved in their HIV care.
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Patients from central Europe visited their GP more frequently than their counterparts in northern and southern Europe and, whilst a small number of patients received their HIV care primarily from their GP (8%, 108/1314), most patients received their HIV care primarily through physicians in HIV specialist clinics (84–99% across Europe) (Fig. 1
).
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Overall, 54% of patients did not have a GP involved in their HIV care, varying from 91% (77/85) of respondents from Portugal to 17% (11/65) from The Netherlands. Amongst these patients, the reasons given were that 93.5% were satisfied with the care that they received from a specialist unit, 62% were concerned that their GP would not know enough about HIV infection, 50% were not aware of a GP with experience of HIV infection and 21% were worried about disclosing their serostatus to a GP.
Respondents from central European countries were less worried that their GP would know enough about HIV (49%) compared with respondents from northern (64%) and southern (66%) countries (P = 0.002). Nor were they concerned that their GP might not be sympathetic (22.4%) compared with those from northern (29%) and southern (33.6%) countries.
Satisfaction
Table 3 shows patients' experiences of their contact with their primary HIV physician and GP and their satisfaction with those experiences. Whilst satisfaction rates were high for both GPs (83%) and HIV physicians (95%), there was a trend to prefer HIV specialists (P < 0.001) overall. Generally, satisfaction rates with GPs were lower in southern countries (74%) than central (90%) and northern (85%) countries (P < 0.005), whereas there was no significant difference between regions for satisfaction with HIV physicians.
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Discussion |
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This study illustrates the variation between European countries in the ways that HIV services have been set up. There are, however, inherent biases in a study of this nature, largely due to the way in which the questionnaire was distributed. Whilst most questionnaires were distributed via an HIV treatment centre (80%), this varied from 0% in France, where all were distributed by an HIV support organization, to 96% in Germany.
Only one or two HIV treatment centres per country participated in the study. These centres were all HIV reference centres but were not necessarily representative for their country. The study population has, to some degree, similar characteristics to those of the HIV population of the different countries, with the exception that ethnic minorities were under-represented.
The initial place of HIV testing differs from country to country, so that in central European countries such as France, Germany, Belgium and The Netherlands, there is widespread HIV testing by GPs,5 whereas in northern and southern countries this is done primarily through hospital or specialist services. After diagnosis, however, most patients receive their care primarily at HIV specialist centres.6 Data from centres where the majority of patients acquired HIV through intravenous drug use indicate that almost 25% of these individuals received their care only through their GP.7 However, homosexual men often do not inform their GP of their sexuality or their HIV status8 and seem less likely to use primary care services. Most countries limit the prescription of antiretroviral drugs to specialist centres and do not encourage primary care physicians to take the responsibility for prescribing and/or monitoring antiretroviral therapy, which lays the emphasis of HIV care provision with the specialist centre.
This study shows that even with variations in the organization of health service provision, GP utilization rates are high (65% overall) but that some patients attend a GP who may be unaware of his or her serostatus.
This study confirms previous reports that the majority of patients do want to involve their GP in their HIV care, yet barriers to that involvement persist and patients are more likely to use their hospital clinic than their GP.9 However, most studies have concentrated on GPs' attitudes rather than the patients,10 and this may account in part for why there has been so little involvement of the GP in HIV care provision in general across Europe.
This survey was performed at the time that HAART was being introduced in Europe. As the management of HIV care becomes increasingly complex, there is a tendency for less rather than more involvement of GPs, but a good collaboration between GPs, specialized HIV treatment centres and NGOs remains essential.
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Acknowledgments |
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The Eurosupport Study Group: S Dewit (Hôpital St. Pierre, Belgium), D Degraeve (UFSIA, Belgium), B Kvinesdal and K Schmidt (Hvidovre Hospital, Denmark), J Bourez (Centre Hospitalier de Tourcoing, France), S Bouchoucha (AIDES Fédération Nationale, France), J Kosmidis, P Gargalianos, M Lelekis, J Stefanou and N Papadopoulos (General Hospital of Athens), P Vyras (ELPIDA, Greece), C Vaccaro, C Zucconi and G Liotta (Universita degli Studi di Roma, Italy), C Stadelman (AIDSberodung de la Croix Rouge, Luxembourg), L Caldeira and F Antunes (Hospital de Santa Maria, Lisbon, Portugal), N Ferro (Liga Portuguesa contra a SIDA, Portugal), F Garcia (Servicio de Enfermedades Infecciosas, Barcelona, Spain), J Cobena Guardia (Associacio Anti-SIDA de Catalunya), A Castro (Servicio de Medicina Interna, La Coruña, Spain), FD Goebel (Klinikum Innenstadt, Ludwig-Maximilians-Universität, München, Germany), J Borleffs (Academisch Ziekenhuis Utrecht, The Netherlands), M Dijkgraaf (National Institute of Public Health and the Environment, The Netherlands), P De Prouw (HIV support organisation Utrecht, The Netherlands), D Tomlinson (St. Mary's Hospital, London, UK), with the financial support of the European Commission, Luxembourg.
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References |
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