“A fog that impacts everything”: a qualitative study of health-related quality of life in people living with HIV who have cognitive impairment

Background: Cognitive impairment (CI) in people living with HIV (PLWH) is an important health concern in the context of an ageing HIV population. Impacting 14–28% of PLWH, CI is associated with lower health-related quality of life (HRQoL), however, evaluation of the illness-specific factors comprising HRQoL in PLWH with CI have not been assessed. Objective: We sought to contribute evidence toward an understanding of HRQoL and identify domains of HRQoL in PLWH with CI. Methods: Qualitative interviews with 25 PLWH with objective CI related to HIV disease were conducted with participants attending HIV clinics in the UK. Clinically significant CI was defined based on The European AIDS Clinical Society guidelines, requiring: (i) subjective reporting of cognitive symptoms; (ii) symptoms to be related to HIV (e.g. potentially confounding non-HIV related conditions have been excluded or are being optimally managed) and; (iii) formal neuropsychological assessment confirming CI. Median age was 56 years (range 35–80); 18 participants were men (72%); 11 (44%) were white British and 8 (32%) were Black African; 14 (56%) were men that have sex with men and 10 (40%) were heterosexual; median number of years living with HIV was 17 (range 1–34); and all participants were on combination antiretroviral therapy. Analyses employed techniques from grounded theory, underpinned by an inductive, collaborative team-based approach. Results: Findings revealed seven interrelated domains comprising HRQoL experiences were identified: Physical function, Cognition, Social connectedness, Physical and mental health, Stigma, Self-concept, and Control and acceptance, and each was defined by specific descriptive components. Conclusion: This study provides valuable insights on the factors that drive HRQoL in PLWH with CI and contribute to a body of evidence which provides targets for the development of targeted interventions to maintain or improve quality of life.