Becoming adherent to a preventive treatment for HIV: a qualitative approach

ABSTRACT

The clinical trial ANRS-IPERGAY investigated the efficacy of sexual activity-based (i.e. on demand) HIV pre-exposure prophylaxis (PrEP). Using a qualitative method, we analysed the role of adherence as one of the main elements for PrEP effectiveness and its associated determinants. Data were collected in various French ANRS-IPERGAY sites during the double-blind (2012–2014) and open-label study (2015–2016) phases, through two individual interviews per participant, collective interviews and focus groups. A total of 83 participants participated in the present study. Our analysis included 32 individual interviews (with 16 participants), 13 collective interviews (n = 45) and 8 focus groups (n = 33). We investigated adherence to on-demand pill-intake schedule, focusing especially on PrEP integration into daily life. PrEP intake was regulated through coping strategies to simplify implementation and avoid stigmatizing reactions. We considered self-care and pharmaceuticalization of prevention as specific features of sexual activity-based PrEP. As PrEP is a prophylaxis for seronegative people, it is contributing to the emergence of a new identity in the HIV field. Health-care professionals should take into account the practical implementation of PrEP schedules into daily life, assist PrEP users in personal management of pill intake and, more generally, improve adherence to the prophylaxis.

KEYWORDS:

• HIV
• adherence
• prevention
• PrEP intake
• coping strategies
• stigmatization
• qualitative methods

Acknowledgements

We would like to thank the study’s participants for their time and their dedication to this research for the benefit of their community. We also thank the AIDES community advocacy group and their community peer counsellors who made this study possible, through their availability and continuous interaction with the participants and study staff at study sites and, most importantly, between scheduled visits (JM. Le Gall, S. Morel, V. Pechenot, S. Bagge, A. Djessima Taba, M. Danet, K. Moudachirou, B. Dos Santos, J. Lambec, S. Rouby, X. Teruin, N. Dumon, V. Coquelin, P. Brunet, L. Gilly, T. Cepitelli, R. Porion, D. Rojas Castro, B. Spire).

We thank our community advisory board for its continuous support during the study (S. Karon (secretary), D. Villard (Action Santé Alternative), JM. Astor (Boucle Rouge), D. Ganaye (Federation LGBT), T. Craig (Act-Up), B. Brive (J’y suis j’y reste), R. Orioli (Les Flamands Roses), M. Vanhedde (Solidarite SIDA), H. Baudoin (Sida Info Service), H. Fisher (TRT-5)) and the Gay communities in France and Canada (COQSIDA, REZO) who supported this work (Drs S. Becker, P.S. Sow, J. Presley and M. Aikenhead at the Bill and Melinda Gates Foundation for fruitful discussions and funding; Dr J.F. Rooney, A. Cheng, H. Jaffe, C. Rabian and P. Petour at Gilead Sciences for donating study drugs; and members of the Independent Data and Safety Monitoring Board for their expertise and guidance (Drs D. Costagliola (Chair), Y. Yazdanpanah, V.-K. Nguyen, A.-M. Taburet and C. Taéron)).

§The ANRS-IPERGAY study group: J.-M. Molina (coordinator), C. Capitant, B. Spire, G. Pialoux, L. Cotte, I. Charreau, C. Tremblay, J.-M. Le Gall, E. Cua, A. Pasquet, F. Raffi, C. Pintado, C. Chidiac, J. Chas, P. Charbonneau, C. Delaugerre, M. Suzan-Monti, B. Loze, J. Fonsart, G. Peytavin, A. Cheret, J. Timsit, G. Girard, N. Lorente, M. Préau, J.F. Rooney, M.A. Wainberg, D. Thompson, W. Rozenbaum, V. Doré, L. Marchand, M.-C. Simon, N. Etien, J.-P. Aboulker, L. Meyer and J.-F. Delfraissy.

Participating hospitals and investigators: Paris St-Louis: C. Pintado, B. Loze, C. Delaugerre, P. Charbonneau, C. Gatey, D. Ponscarme, P. Penot, L. Niedbalski, R. Veron, J. Delgado, E. Dalle, S. Parlier, I. Madelaine, J. Fonsart, M. Danet, N. Mahjoub, N. Mezreb, K. Moudachirou, S. Morel, G. Conort, F. Lorho, M. Meunier, W. Rozenbaum, JM Molina; Paris Tenon: J. Chas, C. Monfort, J. Foucoin, B. Boissavy, S. Cousseau, S. Huon, M. Danet, A. Djessima, V. Berrebi, A. Adda, S. le Nagat, L. Zarka, J. Berdougo, G. Pialoux; Lyon: C. Chidiac, N. Mzoughi, F. Clement, A. Decouty, C. Chapolard, M. Godinot, C. Adouard-groslafeige, J. Koffi, A. Pansu, A. Becker, S. Pailhes, F. Bonnet, F. Jeanblanc, C. Brochier, X. Teruin, S. Rouby, L. Gilly, L. Cotte; Montréal: C. Beauvais, P. Arlotto, C. Fortin, A. Talbot, A. Chamberland, A. McKenzie, M. Blanchette, R; Rousseau, K. Montheuth, D. Thompson, M. Morin, M. Wainberg, C. Tremblay; Nice: C. Etienne, F. Tolonin, S. Breaud, V. Péchenot, S. Bagge, T. Cepitelli, PM. Roger, E. Rosenthal, E. Cua; Tourcoing: A. Cheret, P. Cornavin, S. Vandamme, J. Lambec, N. Dumon, O. Leclanche, T. Huleux, R. Biekre, O. Robineau, H. Melliez, H. Bazus, A. Pasquet; Nantes: C. Bernaud, M. Besnier, B. Bonnet, N. Hall, M. Cavellec, H. Hue, L. Larmet, M. Colas, R. Choquet, F. Raffi.

Finally, we would like to thank Jude Sweeney for the English revision and editing of the manuscript.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was sponsored by the ANRS (France Recherche Nord & Sud Sida-HIV Hépatites) and funded by the ANRS and the Fonds de dotation Pierre Bergé pour la Prévention – SIDACTION.