Journal Article

Differences in HIV cure clinical trial preferences of French people living with HIV and physicians in the ANRS‐APSEC study: a discrete choice experiment

Lafeuillade, A., Mora, Marion, Ragnaud, J.M., Delobel, P., Zucman, D., Michelet, C., Suzan‐Monti, Marie, Girard, P.M., Zucman, David, Blacher, J., Fressard, Lisa, Molina, J.M., Lambotte, Olivier, Senneville, E., Mimi, Mohamed, Sagaon‐Teyssier, Luis, Weiss, L., Protiere, Christel, De Lacroix, I., Lelièvre, J.D., Lepeu, G., Meyer, Laurence, Fiorentino, Marion, Morlat, P., Spire, Bruno, Peyramond, D., Préau, Marie, Blanc, A.P., Poizot‐Martin, I., Yazdanpanh, Y., Raffi, F., Goujard, C., Bergmann, J.F., Raffi, François, Arnold, Michael, Katlama, C., Piroth, L., Lelièvre, Jean D

2020

Overview

Introduction Despite the advent of HIV cure‐related clinical trials (HCRCT) for people living with HIV (PLWH), the risks and uncertainty involved raise ethical issues. Although research has provided insights into the levers and barriers to PLWH and physicians' participation in these trials, no information exists about stakeholders' preferences for HCRCT attributes, about the different ways PLWH and physicians value future HCRCT, or about how personal characteristics affect these preferences. The results from the present study will inform researchers' decisions about the most suitable HCRCT strategies to implement, and help them ensure ethical recruitment and well‐designed informed consent. Methods Between October 2016 and March 2017, a discrete choice experiment was conducted among 195 virally controlled PLWH and 160 physicians from 24 French HIV centres. Profiles within each group, based on individual characteristics, were obtained using hierarchical clustering. Trade‐offs between five HCRCT attributes (trial duration, consultation frequency, moderate (digestive disorders, flu‐type syndrome, fatigue) and severe (allergy, infections, risk of cancer) side effects (SE), outcomes) and utilities associated with four HCRCT candidates (latency reactivation, immunotherapy, gene therapy and a combination of latency reactivation and immunotherapy), were estimated using a mixed logit model. Results Apart from severe SE – the most decisive attribute in both groups – PLWH and physicians made different trade‐offs between HCRCT attributes, the latter being more concerned about outcomes, the former about the burden of participation (consultation frequency and moderate SE). These different trades‐offs resulted in differences in preferences regarding the four candidate HCRCT. PLWH significantly preferred immunotherapy, whereas physicians preferred immunotherapy and combined therapy. Despite the heterogeneity of characteristics within the PLWH and physician profiles, results show some homogeneity in trade‐offs and utilities regarding HCRCT. Conclusions Severe SE, not outcomes, was the most decisive attribute determining future HCRCT participation. Particular attention should be paid to providing clear information, in particular on severe SE, to potential participants. Immunotherapy would appear to be the best HCRCT candidate for both PLWH and physicians. However, if the risk of cancer could be avoided, gene therapy would become the preferred strategy for the latter and the second choice for the former.

• Publisher: International AIDS Society,John Wiley & Sons, Inc,BioMed Central (2008-2012) ; International Aids Society (2008-) ; Wiley (2017-),John Wiley and Sons Inc
• Subject: Acquired immune deficiency syndrome / AIDS / AIDS (Disease) / AIDS research / AIDS vaccines / Allergies / Altruism / Bacteriology / Bias / Cardiology and cardiovascular system / Care and treatment / Choice Behavior / clinical trial design recommendations / Clinical trials / Clinical Trials as Topic / Design / discrete choice experiment / Emerging diseases / Ethical aspects / ethics / Experiments / Female / France / Gastrointestinal diseases / Health aspects / Health risks / Heterogeneity / HIV / HIV eradication/remission / HIV infection / HIV Infections - drug therapy / Human health and pathology / Human immunodeficiency virus / Humans / Immunotherapy / Infectious diseases / Life Sciences / Male / Management / Medical ethics / Microbiology and Parasitology / Middle Aged / mixed logit model / Parasitology / Participation / Physicians / Polls & surveys / Preferences / Product development / Questionnaires / Side effects / social sciences / Studies / therapeutic HIV vaccine trial / Virology