Résumés
Résumé
Cet article présente une synthèse des principaux aspects traités par la littérature internationale de sciences humaines et sociales (SHS) depuis l’apparition des multithérapies antirétrovirales en 1996. Initialement sollicitées pour contribuer à l’observance de ces traitements, les SHS ont permis de dépasser l’approche «prédictive», jusque là dominante dans les disciplines biomédicales, qui visait à identifier sur la base d’un nombre limité de caractéristiques a priori les patients censés présenter un «haut risque» de non-observance. Elles ont montré que l’observance est un processus d’apprentissage dynamique qui dépend avant tout de l’expérience subjective vécue par les patients. La «chronicisation» de la maladie VIH a conduit les SHS à s’intéresser à l’impact des traitements sur tous les aspects de la vie quotidienne (de l’insertion professionnelle à la sexualité), en même temps qu’elles soulignent la contradiction entre les espoirs suscités par des multithérapies économiquement coût-efficaces d’une part, et la précarité sociale d’une proportion croissante de personnes atteintes, d’autre part. Ces recherches débouchent sur des recommandations visant à adapter les politiques publiques de lutte contre l’épidémie de sida tout en préservant le potentiel d’innovations qu’elles ont favorisé dans les systèmes de santé et de protection sociale, ainsi que dans les relations médecin/malade.
Summary
This article presents a synthesis of the main topics covered by social science research (SSR) on HIV/AIDS, since the advent of highly active antiretroviral therapies (HAART) in 1996. SSR has shown that non-adherence cannot be reliably «predicted» on the sole basis of a few a priori patient characteristics that clinicians could easily identify before initiation of HAART, and that a dynamic approach to adherence, continuously monitoring the impact of patients’ subjective experience with HAART is needed. In relationship with the evolution of HIV infection toward a «chronic disease», SSR has dealt with the impact of HAART on all aspects of patients’ daily lives (from employment and professional status to sexuality). It has also emphasised the potential contradictions between the hopes generated by these cost-effective therapeutic advances, on the one hand, and the high social vulnerability of a growing proportion of people living with HIV-AIDS, on the other hand. Finally, SSR suggests recommendations for «normalising» AIDS public policies without losing the potential for innovations that the fight against this epidemic has introduced in health care and «Social Security» systems, as well as physician-patient’s relationships.
Parties annexes
Références
- 1. Bajos N, Bozon M, Ferrand A, Giami A, Spira A et le groupe ACSF. La sexualité aux temps du Sida. Paris: PUF, 1998.
- 2. Delor F, Hubert M. Revisiting the concept of vulnerability. Soc Sci Med 2000; 50: 1557-70.
- 3. Pierret J. Everyday life with AIDS/HIV: surveys in the social sciences. Soc Sci Med 2000; 50: 1589-98.
- 4. Moatti JP, Souteyrand Y. HIV/AIDS social and behavioural research: past advances and thoughts about the future. Soc Sci Med 2000; 50: 1519-32.
- 5. Paterson DL, Swindells S, Mohr J, et al. Adherence to protease inhibitor therapy and outcomes in patients with HIV infection. Ann Intern Med 2000; 133: 21-30.
- 6. Bangsberg DR, Perry S, Charlebois ED, et al. Non-adherence to highly active antiretroviral therapy predicts progression to AIDS. AIDS 2001; 15: 1181-3.
- 7. Wainberg M, Friedland G. Public health implications of antiretroviral therapy and HIV drug resistance. JAMA 1998; 279: 1977-83.
- 8. Bangsberg DR, Hecht FM, Clague H, et al. Provider assessment of adherence to HIV antiretroviral therapy. J Acquir Immune Defic Syndr 2001; 26: 435-42.
- 9. Duran S, Solas C, Spire B,et al. Do HIV-infected injecting drug users over-report adherence to highly active antiretroviral therapy? A comparison between patients’ self- reports and serum protease inhibitor concentrations in the French Manif 2000 cohort study. AIDS 2001; 15: 1075-7.
- 10. Wendel CS, Mohler MJ, Kroesen K, Ampel NM, Gifford AL, Coons SJ. Barriers to use of electronic adherence monitoring in an HIV clinic. Ann Pharmacother 2001; 35: 1010-5.
- 11. Chesney MA, Ickovics JR, Chambers DB, et al. Self-reported adherence to antiretroviral medications among participants in HIV clinical trials: the AIDS clinical trials group (AACTG) adherence instruments. AIDS Care 2000; 12: 255-66.
- 12. Moatti JP, Spire B, Duran S. Un bilan des recherches socio-comportementales sur l’observance des traitements dans l’infection à VIH: au delà des modèles biomédicaux ? Rev Epidemiol Santé Publ 2000; 48: 182-9.
- 13. Gordillo V, del Amo J, Soriano V, González-Lahoz J. Sociodemographic and psychological variables influencing adherence to antiretroviral therapy. AIDS 1999; 13: 1763-9.
- 14. Spire B, Duran S, Souville M, Leport C, Raffi F, Moatti JP. Adherence to highly active antiretroviral therapies (HAART) in HIV-infected patients: from a predictive to a dynamic approach. Soc Sci Med 2002; 54: 1481-96.
- 15. Ammassari A, Murri R, Pezzotti P, et al. Self-reported symptoms and medication side effects influence adherence to highly active antiretroviral therapy in persons with HIV infection. J Acquir Immune Defic Syndr 2001; 28: 445-9.
- 16. Duran S, Savès M, Spire B, et al. Failure to maintain long-term adherence to highly active antiretroviral therapy: the role of lipodystrophy. AIDS 2001; 15: 2441-4.
- 17. Carrieri P, Cailleton V, Le Moing V, et al. The dynamic of adherence to highly active antiretroviral therapy: results from the French national APROCO cohort. J Acquir Immune Defic Syndr 2001; 28: 232-9.
- 18. Nieuwkerk PT, Gisolf EH, Reijers MH, et al. Long-term quality of life outcomes in three antiretroviral treatment strategies for HIV-1 infection. AIDS 2001; 15: 1985-91.
- 19. Low-Beer S, Chan K, Wood E, et al. Health related quality of life among persons with HIV after the use of protease inhibitors. Qual Life Res 2000; 9: 941-9.
- 20. Carrieri MP, Spire B, Duran S, et al. Health-related quality of life after one year of highly active antiretroviral therapy. J Acquir Immune Defic Syndr 2003; 32: 38-47.
- 21. Strathdee SA, Palepu A, Cornelisse PG, et al. Barriers to use of free antiretroviral therapy in injection drug users. JAMA 1998; 280: 547-9
- 22. Carrieri MP, Moatti JP, Vlahov D, et al. Access to antiretroviral treatment among French HIV-infected injection drug users (IDUs); the influence of continued drug use. J Epidemiol Community Health 1999; 53: 4-8.
- 23. Moatti JP, Carrieri MP, Spire B, Gastaut JA, Cassuto JP, Moreau J. Adherence to HAART in French HIV-infected injecting drug users: the contribution of buprenorphine drug maintenance treatment. The Manif 2000 study group. AIDS 2000; 14: 151-5.
- 24. Delfraissy JF. Prise en charge des personnes infectées par le VIH. Recommandations du groupe d’experts. Rapport 2002. Paris: Médecine-Sciences/Flammarion, 2002.
- 25. Tuldra A, Fumaz CR, Ferrer MJ, et al. Prospective randomized two-arm controlled study to determine the efficacy of a specific intervention to improve long-term adherence to highly active antiretroviral therapy. J Acquir Immune Defic Syndr 2000; 25: 221-8.
- 26. Hellinger FJ, Fleishman J A. Estimating the national cost of treating people with HIV disease: patient, payer, and provider data. J Acquir Immune Defic Syndr 2000; 24: 182-8.
- 27. Sendi PP, Bucher HC, Harr T, et al. Cost effectiveness of highly active antiretroviral therapy in HIV-infected patients. Swiss HIV cohort study. AIDS 1999; 13: 1115-22.
- 28. Bozzette SA, Joyce G, McCaffrey DF, et al. Expenditures for the care of HIV-infected patients in the era of highly active antiretroviral therapy. HIV cost and services utilization study consortium. N Engl J Med 2001; 344: 817-23.
- 29. Keiser P, Nassar N, Kvanli MB, Turner D, Smith JW, Skiest D. Long-term impact of highly active antiretroviral therapy on HIV-related health care costs. J Acquir Immune Defic Syndr 2001; 27: 14-9.
- 30. Garber A, Phelps CE. Economic foundations of cost-effectiveness analysis. J Health Eco 1997; 16: 1-31.
- 31. Freedberg KA, Losina E, Weinstein MC, et al. The cost effectiveness of combination antiretroviral therapy for HIV disease. N Engl J Med 2001; 344: 824-31.
- 32. Vernay-Vaisse C, Enel P, Ben Diane MK, Rey D, Carrieri MP, Obadia Y. Facteurs associés à la découverte de la séropositivité au VIH à un stade d’immunodépression avancé. BEH 2002; 15: 61-3.
- 33. Karon JM, Fleming PL, Steketee RW, De Cock KM. HIV in the United States at the turn of the century: an epidemic in transition. Am J Publ Health 2001; 91: 1060-8.
- 34. Ezzy D, De Visser R, Bartos M. Poverty, disease progression and employment among people living with HIV/AIDS in Australia. AIDS Care 1999; 11: 405-14.
- 35. Obadia Y, Marimoutou C, Bouhnik AD, Lert F, Dray-Spira R, Bousquet F. Les aides apportées aux personnes atteintes par l’infection à VIH-SIDA: une enquête auprès des patients des services de soins en Île-de-France et en Provence-Alpes-Côte d’Azur. Etudes et Résultats. Paris: DREES, 2002; n°203.
- 36. Piketty C, Castiel P, Giral P, et al. Lack of legal income is strongly associated with an increased risk of AIDS and death in HIV-infected injecting drug users. AIDS Care 1999; 11: 429-36.
- 37. Fabre G, Tchobanian S. Les tensions actuelles entre le VIH et l’emploi. Sciences Sociales et Santé 2001; 19: 43-66.
- 38. Colson AE, Keller Marla J, Sax PE, Pettus PT, Platt R, Choo PW. Male sexual dysfunction associated with antiretroviral therapy. J Acquir Immune Defic Syndr 2002; 30: 27-32.
- 39. Schiltz MA, Sandfort TG. HIV-positive people, risk and sexual behaviour. Soc Sci Med 2000; 50: 1571-88.
- 40. Lert F. Advances in HIV treatment and prevention: should treatment optimism lead to prevention pessimism ? AIDS Care 2000; 12: 745-55.
- 41. Dukers NH, Spaargaren J, Geskus RB, Beijnen J, Coutinho RA, Fennema HS. HIV incidence on the increase among homosexual men attending an Amsterdam sexually transmitted disease clinic: using a novel approach for detecting recent infections. AIDS 2002; 16: 19-24.
- 42. Adam P, Delmas MC, Brunet JB. Impact des nouveaux traitements antirétroviraux sur les attitudes et les comportements préventifs des lecteurs de la presse gay. De l’impact perçu par les individus à la mesure d’une influence effective. In: Lert F, Souteyrand Y, eds. Séropositivité, vie sexuelle et risque de transmission du VIH. Collection Sciences Sociales et Sida, Paris: Agence Nationale de Recherche sur le Sida. 1999: 43-53.
- 43. Johnson AM, Mercer CH, Erens B, et al. Sexual behaviour in Britain: partnerships, practices, and HIV risk behaviours. Lancet 2001; 358: 1835-42.
- 44. Do AN, Hanson DL, Dworkin MS, Jones JL. Risk factors for and trends in gonorrhea incidence among persons infected with HIV in the United States. AIDS 2001; 15: 1149-55.
- 45. Van de Ven P, Kippax S, Knox S, Prestage G, Crawford J. HIV treatments optimism and sexual behaviour among gay men in Sydney and Melbourne. AIDS 1999; 13: 2289-94.
- 46. Scheer S, Chu PL, Klausner JD, Katz MH, Schwarcz SK. Effect of highly active antiretroviral therapy on diagnoses of sexually transmitted diseases in people with AIDS. Lancet 2001; 357: 432-5.
- 47. Bouhnik AD, Moatti JP, Vlahov D, et al. Highly active antiretroviral treatment does not increase sexual risk behaviour among French HIV infected injecting drug users. J Epidemiol Commun Health 2002; 56: 349-53.
- 48. Law MG, Prestage G, Grulich A, Van de Ven P, Kippax S. Modelling the effect of combination antiretroviral treatments on HIV incidence. AIDS 2000; 15: 1287-94.
- 49. Bayer R. Clinical progress and the future of HIV exceptionalism. Arch Intern Med 1999; 159: 1042-8.
- 50. Rosenbrock R, Dubois-Arber F, Moers M, Pinell P, Schaeffer D, Setbon M. The normalization of AIDS in Western European countries. Soc Sci Med 2000; 50: 1607-29.
- 51. Landman R, Moatti JP, Perrin V, Huard P and the PAMPA Study Group. Variability of attitudes toward early initiation of HAART for HIV infection: a study of French prescribing physicians. AIDS Care 2000; 12: 711-6.
- 52. Ickovics JR, Hamburger ME, Vlahov D, et al. Mortality, CD4 cell count decline, and depressive symptoms among HIV-seropositive women: longitudinal analysis from the HIV epidemiology research study. JAMA 2001; 285: 1466-74.