Acceptability of HIV cure-related trials: the challenges for physicians and people living with HIV (ANRS-APSEC)

References

• Arnold, M. P., Evans, D., & Vergel, N. (2015). Recruitment and ethical considerations in HIV cure trials requiring treatment interruption. Virus Eradication, 1, 43–48.
   PubMed Web of Science ®Google Scholar
• Barbot, J. (1998). Agir sur les essais thérapeutiques. L’expérience des associations de lutte contre le sida en France. Revue d’Épidémiologie et de Santé Publique, 46, 305–315.
   PubMedGoogle Scholar
• Barbour, R., & Kitzinger, J. (1999). Developing focus group research: Politics, theory and practice. London: Sage Publications.
   Google Scholar
• Barré-Sinoussi, F., Ross, A. L., & Delfraissy, J.-F. (2013). Past, present and future: 30 years of HIV research. Nature Reviews Microbiology, 11(12), 877–883. doi: 10.1038/nrmicro3132
   PubMed Web of Science ®Google Scholar
• Bayer, R. (1991). Public health policy and the AIDS epidemic: An end to HIV exceptionalism? New England Journal of Medicine, 324(21), 1500–1504. doi: 10.1056/NEJM199105233242111
   PubMed Web of Science ®Google Scholar
• Braun, V, & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. doi: 10.1191/1478088706qp063oa
   Google Scholar
• Brion, J. (2014). The patient–provider relationship as experienced by a diverse sample of highly adherent HIV-infected people. Journal of the Association of Nurses in AIDS Care, 25(2), 123–134. doi: 10.1016/j.jana.2013.01.006
   PubMed Web of Science ®Google Scholar
• Chin, L. J., Berenson, J. A., & Klitzman, R. L. (2016). Typologies of altruistic and financial motivations for research participation: A qualitative study of MSM in HIV vaccine trials. Journal of Empirical Research on Human Research Ethics, 11(4), 299–310. doi: 10.1177/1556264616679537
   PubMed Web of Science ®Google Scholar
• Dabis, F., Newell, M. L., & Hirschel, B. (2010). HIV drugs for treatment, and for prevention. The Lancet, 375(9731), 2056–2057. doi: 10.1016/S0140-6736(10)60838-0
   PubMed Web of Science ®Google Scholar
• Dhalla, S., Poole, G., Singer, J., Patrick, D. M., & Kerr, T. (2012). Cognitive factors and willingness to participate in an HIV vaccine trial among HIV-positive injection drug users. Psychology and Medicine, 17(2), 223–234.
   Google Scholar
• Dubé, K., Evans, D., Dee, L., Sylla, L., Taylor, J., Skinner, A., … Tucker, J. D. (2017). ‘We need to deploy them very thoughtfully and carefully’: Perceptions of analytical treatment interruptions in HIV cure research in the United States–a qualitative inquiry. AIDS Research and Human Retroviruses, 10. doi: 10.1089/AID.2017.0067
   Google Scholar
• Dubé, K., Evans, D., Sylla, L., Taylor, J., Weiner, B. J., Skinner, A., … Greene, S. B. (2017). Willingness to participate and take risks in HIV cure research: Survey results from 400 people living with HIV in the US. Journal of Virus Eradication, 3, 40–50.
   PubMed Web of Science ®Google Scholar
• Dubé, K., Taylor, J., Sylla, L., Evans, D., Dee, L., Burton, A., … Newman, P. A. (2017). ‘Well, it’s the risk of the unknown … right?’: A qualitative study of perceived risks and benefits of HIV cure research in the United States. PloS One, 12(1), e0170112. doi: 10.1371/journal.pone.0170112
   PubMed Web of Science ®Google Scholar
• Epstein, S. (1995). The construction of lay expertise: Aids activism and the forging of credibility in the reform of clinical trials. Science, Technology, & Human Values, 20(4), 408–437. doi: 10.1177/016224399502000402
   PubMed Web of Science ®Google Scholar
• Henderson, G. E., Peay, H. L., Kroon, E., Cadigan, R. J., Meagher, K., Jupimai, T., … Rennie, S. (2017). Ethics of treatment interruption trials in HIV cure research: Addressing the conundrum of risk/benefit assessment. Journal of Medical Ethics, 10. doi: 10.1136/medethics-2017-104433
   Google Scholar
• Henrich, T. J., Hanhauser, E., Marty, F. M., Sirignano, M. N., Keating, S., Lee, T. H., … Kuritzkes, D. R. (2014). Antiretroviral-free HIV-1 remission and viral rebound after allogeneic stem cell transplantation: Report of 2 cases. Annals of Internal Medicine, 161(5), 319–327. doi: 10.7326/M14-1027
   PubMed Web of Science ®Google Scholar
• Jansen, L. A. (2009). The ethics of altruism in clinical research. Hastings Center Report, 39(4), 26–36. doi: 10.1353/hcr.0.0164
   PubMed Web of Science ®Google Scholar
• Johnston, R., & Barré-Sinoussi, F. (2012). Controversies in HIV cure research. Journal of the International AIDS Society, 15(1), 16. doi: 10.1186/1758-2652-15-16
   PubMedGoogle Scholar
• Kalampalikis, N. (2004). Les focus groups, lieux d’ancrages. Bulletin de Psychologie, 57(3), 281–289.
   Google Scholar
• Kielmann, K., & Cataldo, F. (2010). Tracking the rise of the “expert patient” in evolving paradigms of HIV care. AIDS Care, 22(1), 21–28. doi: 10.1080/09540121003721000
   PubMedGoogle Scholar
• McMahon, J. H., Elliott, J. H., Roney, J., Hagenauer, M., & Lewin, S. R. (2015). Experiences and expectations of participants completing an HIV cure focused clinical trial. AIDS, 29(2), 248–250. doi: 10.1097/QAD.0000000000000534
   PubMed Web of Science ®Google Scholar
• Mills, E., Wilson, K., Rachlis, B., Griffith, L., Wu, P., Guyatt, G., & Cooper, C. (2006). Barriers to participation in HIV drug trials: A systematic review. The Lancet Infectious Diseases, 6(1), 32–38. doi: 10.1016/S1473-3099(05)70324-8
   PubMed Web of Science ®Google Scholar
• Newman, C., Mao, L., Canavan, P. G., Kidd, M. R., Saltman, D. C., & Kippax, S. C. (2010). HIV generations? Generational discourse in interviews with Australian general practitioners and their HIV positive gay male patients. Social Science and Medicine, 70(11), 1721–1727. doi: 10.1016/j.socscimed.2010.02.006
   PubMed Web of Science ®Google Scholar
• Nguyen, V.-K., O’Malley, J., & Pirkle, C. M. (2011). Remedicalizing an epidemic: From HIV treatment as prevention to HIV treatment is prevention. AIDS, 25(3), 291–293. doi: 10.1097/QAD.0b013e3283402c3e
   PubMed Web of Science ®Google Scholar
• Préau, M., Villes, V., & Spire, B. (2009). La rupture de confiance envers le médecin auprès de patients infectés par le VIH: Quels déterminants psychosociaux? Les Cahiers Internationaux de Psychologie Sociale, 82, 145–167. doi: 10.3917/cips.082.0145
   Google Scholar
• Protière, C., Spire, B., Mora, M., Poizot-Martin, I., Préau, M., Doumergue, M.,  …  Suzan-Monti, M. (in press). Patterns of patient and healthcare provider viewpoints regarding participation in HIV cure-related clinical trials. Plos One.
   Web of Science ®Google Scholar
• Rawstorne, P., Prestage, G., Grierson, J., Song, A., Grulich, A., & Kippax, S. (2005). Trends and predictors of HIV-positive community attachment among PLWHA. AIDS Care, 17(5), 589–600. doi: 10.1080/09540120412331299834
   PubMed Web of Science ®Google Scholar
• Ross, S., Grant, A., Counsell, C., Gillespie, W., Russell, I., & Prescott, R. (1999). Barriers to participation in randomised controlled trials: A systematic review. Journal of Clinical Epidemiology, 52(12), 1143–1156. doi: 10.1016/S0895-4356(99)00141-9
   PubMed Web of Science ®Google Scholar
• Sáez-Cirión, A., Bacchus, C., Hocqueloux, L., Avettand-Fenoel, V., Girault, I., Lecuroux, C., … Lifson, J. (2013). Post-treatment HIV-1 controllers with a long-term virological remission after the interruption of early initiated antiretroviral therapy ANRS VISCONTI Study. PLoS Pathogens, 9(3), e1003211. doi: 10.1371/journal.ppat.1003211
   PubMed Web of Science ®Google Scholar
• Siegel, K., & Lekas, H.-M. (2002). AIDS as a chronic illness: Psychosocial implications. AIDS, 16, S69–S76. doi: 10.1097/00002030-200216004-00010
   PubMed Web of Science ®Google Scholar
• Simmons, R., Kall, M., Collins, S., Cairns, G., Taylor, S., Nelson, M., … Fox, J. (2017). A global survey of HIV-positive people’s attitudes towards cure research. HIV Medicine, 18(2), 73–79. doi: 10.1111/hiv.12391
   PubMed Web of Science ®Google Scholar
• Tucker, J. D., & Rennie, S. (2014). Social and ethical implications of HIV cure research. AIDS, 28(9), 1247–1250. doi: 10.1097/QAD.0000000000000210
   PubMed Web of Science ®Google Scholar
• Whiteside, A., & Smith, J. H. (2009). Exceptional epidemics: AIDS still deserves a global response. Globalization and Health, 5(1), 1–6. doi: 10.1186/1744-8603-5-15
   PubMedGoogle Scholar