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

Abstract

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.

Health-Related Quality of Life in People Living With HIV With Cognitive Symptoms: Assessing Relevant Domains and Associations

“…In this study, we examined a comprehensive set of HRQL scales, selected to represent the domains (physical function, cognition, social connectedness, physical and mental health and wellbeing, self-concept, HIV stigma, and acceptance of cognitive impairment and control over cognitive health outcomes) identified as comprising HRQL in PLWH with cognitive impairment. 19 The findings confirmed the relevance of the domains in a larger group of PLWH with cognitive symptoms as scores loaded primarily onto one common factor. This indicated that there is one underlying construct driving scores and that each domain fits onto this single theoretical construct, which we identified as HRQL based on previous qualitative work.…”

“…The instruments chosen to represent and ‘operationalise’ the HRQL domains identified 19 had to fulfil several criteria. This included: i) shown to have acceptable reliability and validity, preferably tested with HIV patients previously; ii) reasonably short in terms of time to complete; and iii) preferable provide (clinically) relevant cut-off points.…”

“… 18 As noted above, PLWH with cognitive impairment report poorer HRQL than PLWH without CI, and these individuals face further compounding difficulties. 4 , 19 , 20 The deficits in memory, learning, attention, and executive function experienced have an illness-specific impact on health and function across traditional HRQL domains (i.e., physical, mental, social) along with domains not typically considered in generic or HIV-specific conceptualisations. 19 , 21 – 23 To the best of our knowledge no studies to date have assessed the HRQL of PLWH with cognitive issues along relevant illness-specific domains.…”

“…PLWH reported key issues in domains of: physical function, cognition, social connectedness, HIV stigma, self-concept, acceptance of and control over cognitive health, and physical and mental health and wellbeing. 19 Using a set of existing instruments selected to represent each HRQL domain identified, this study aimed to further validate the domains influencing HRQL in a larger group of PLWH with cognitive symptoms, explore the associations between domains and to assess the HRQL of this group.…”

Severity and correlates of brain fog in people with traumatic brain injury

“…Assessing symptoms is important as they can occur across multiple conditions and often involve similar biological mechanisms, enabling the use of similar treatment approaches. Brain fog, for example, has been studied in multiple conditions also involving neuroinflammation such as chemotherapy receivers, fibromyalgia, lupus, HIV, chronic fatigue syndrome, celiac disease, postural tachycardia syndrome, and thyroid disorders (Alford et al, 2022; Mackay, 2015; Ross et al, 2013; Samuels & Bernstein, 2022; Theoharides, Stewart, Hatziagelaki, & Kolaitis, 2015). Most recently, brain fog has been denoted as a major and long‐term symptom of SARS‐CoV‐2‐19 infection (Asadi‐Pooya et al, 2022; Callan et al, 2022) also attributed to neuroinflammation.…”