Reframing analytical treatment interruption through participants’ and decliners’ eyes: insights from an HIV remission trial
Sarah Lefebvre, Cécile Goujard, Laurence Meyer, Christine Durier, Mélanie Jaudon, Joséphine Tine, Lucie De Gastines, Nicolas Leturque, Vincent Meiffredy, Bruno Spire, Asier Saez-Cirion, Christel ProtiereObjectives:
This study explored how participants and decliners perceived the French ANRS-175-RHIVIERA-01 trial, which evaluated HIV control during analytical treatment interruption (ATI) among individuals treated with antiretroviral treatment (ART) since acute HIV infection, virologically suppressed, and carrying the HLA-B35/53Bw4TTC2 genotype. It also explored how participants’ experiences evolved over follow-up.
Methods:
Between 2023 and 2024, semi-structured interviews were conducted with decliners and participants. Interviews were analyzed using interpretative description and thematic analysis.
Results:
We interviewed 13 participants (3 women) and 3 decliners (all men). Median age was 51, and median time since diagnosis was 10 years. Participants described the trial as ‘good news’, hoped for personal benefit, and expressed a sense of moral obligation toward healthcare providers (HCPs). Decliners perceived no personal benefit and considered ATI too risky. Most participants experienced ART interruption positively, although only women described it as a ‘relief’. Most appreciated the home-based blood sampling option. Experiences evolved during viral rebound, shaped by HCPs’ discourses, viral load levels, and symptoms. Those who resumed ART experienced it as a disappointment, and sometimes as a ‘failure’. Participants mobilized three forms of experiential knowledge: physical, clinical, and theoretical. All were satisfied with their decision to participate.
Conclusion:
Our findings show that ATI is not a homogeneous experience but a dynamic process comprising three successive phases: ART interruption, viral rebound, and, for some, ART resumption. Moreover, they highlight the need for careful semantic framing in interactions with eligible individuals, exploration of HCPs’ emotional investment, and integration of gender-related considerations in future research.