Objective: Side effects of antiretroviral therapy (ART) can have a negative impact on health-related quality of life threatening long-term retention in HIV care and adherence to ART. The aim of the French community-based survey EVE was to document personal experiences with side effects, the related physician-patient communication, and solutions found to deal with them.
Design: Cross-sectional study of women between September 2013 to September 2014.
Methods: An anonymous online questionnaire included the HIV Symptom Distress Module, which explores 20 symptoms.
Results: In all, 301 women on ART participated in the study (median age: 49 years; median duration of ART: 14 years). They reported having experienced a median of 12 symptoms (Q1-Q3: 9-15) during the previous 12 months. Overall, 56% of them reported having found at least a partial solution to dealing with their symptoms. Women reporting financial difficulties were twice less likely to have found solutions to coping with their side effects (AOR: 0.5; 95% CI: 0.3-0.8). Feeling supported by the health-care provider (AOR: 2.1; 95% CI: 1.1-3.9) and being in contact with HIV/AIDS organisations (AOR: 1.9; 95% CI: 1.2-3.2) were positively associated with coping. Seventeen percent reported having modified their ART regimen to improve tolerance, with only 2 in 3 informing their physician afterwards. Reporting financial difficulties and living with more bothersome symptoms increased the risk of ART regimen modification without health-care provider consultation.
Conclusion: The EVE study has called attention to the large number of side effects experienced by WLWHIV, only half of whom have found self-care strategies to manage their symptoms. Modification of ART regimen by the women themselves was not uncommon.