Qualité de vie des personnes vivant avec le VIH : Mesure, déterminants et axes de prise en charge : Conception, recherches préliminaires et première année de mise en œuvre de la sous-étude QuAliV dans la cohorte ANRS CO3 Aquitaine

HIV has become a chronic disease in France. Nevertheless, HIV and associated inflammation, the effects of antiretroviral exposure, the high prevalence of modifiable risk factors for age-related diseases (e.g. smoking) and the effects of other viral co-infections together with social and economic vulnerability make the quality of life of people living with HIV (PLWH) an ongoing concern. French clinical guidelines have urged providers to address PLWH’s health as defined by the World Health Organisation. To take on this challenge, we designed an electronic module for the collection of patient-reported outcome linked the ANRS Aquitaine cohort’s data capture and visualisation system. The proposed solution relies on validated questionnaires and its content is based on current clinical guidelines on HIV management. The questionnaires’ psychometric properties, administration method/mode, and length were evaluated and paper-based instruments adapted following the International Society for Pharmacoeconomics and Outcomes Research’s guidance. Two rounds of usability evaluations were conducted first in research staff and the PLWH. We asked participants to complete a set of tasks using the ‘think aloud’ method and respond to the System Usability Scale (SUS). Input from experts/investigators and subsequently patients was used to improve features of the system. We calculated a summary score and defined “success” a priori as a usability score of 70. Experts reported average SUS scores of 65 ± 18.87 and patients reported average SUS scores of 85 ± 5.4 (p=0.032). To date, the collection of (electronic and paper) patient-reported outcomes, including health-related quality of life, is underway in five hospitals. Of those invited to participate (July 2018-May 2019), 90.5% (1,521/1,681) accepted, 7.1% (119/1,681) refused and 2.4% (41/1,681) were not eligible. Of those who accepted, 82% (1,246/1,521) were considered to have met the basic requirements of the newly designed solution whereas 18% (275/1,521) did not have a personal email address and/or a reliable Internet connection and were provided an identical paper questionnaire. We verified the psychometric properties of the WHOQOL-HIV BREF instrument, chosen to assess (health-related) quality of life in our population in a sample of 586 PLWH (aged 56 on average, 73% were male, 85% were of French origin, 99% were treated and 93% had an undetectable viral load). The French version of the WHOQOL-HIV BREF has acceptable measurement properties and its broad conceptualization of quality of life, going beyond physical and mental health, may be particularly useful in our population. On a scale of 4 (worst) to 20 (best), the personal belief domain had the highest average score (15.04 ± 3.35) and the lowest psychological health domain (13.70 ± 2.78). The most impaired facets (score of 1-5) were personal relationships (2.7 ± 1.25) and financial resources (2.9 ± 1.15). Women scored significantly lower than men on 12 of 29 facets, including the five HIV-specific facets. People born in North Africa or sub-Saharan Africa have lower scores in the environmental health domain than those born in France (13.19 ± 2.10 versus 14.52 ± 2.56, p