Health-related quality of life in people living with HIV who have cognitive impairment

  • Katie Alford

Student thesis: Doctoral Thesis


Health-related quality of life is an essential end point in the disease management of chronic conditions, such as HIV, with calls to include good quality of life as a ‘fourth 90’ in the 90-90- 90 HIV testing and treatment targets introduced by Joint United Nations Programme on AIDS in 2016. Cognitive impairments impact a broad spectrum of experiences and are seen in 14- 28% of people living with HIV. In this thesis, the health-related quality of life of people living with HIV who have cognitive impairment is explored.

First a scoping review was conducted to examine what is currently known about the health related quality of life of this group and to identify gaps in current knowledge. Research was limited; sixteen articles met inclusion criteria, assessments used a variety of different patient reported outcome measures, and findings were indicative of poor overall health-related quality of life.

Second, qualitative study was conducted with 25 people living with HIV with cognitive impairment attending specialist HIV memory clinics in Brighton and London. Analysis employed techniques from grounded theory and led to the identification of seven broad interrelated domains driving health-related quality of life experiences. The domains identified were: Physical function, Cognition, Social connectedness, Physical and Mental Health and Wellbeing, HIV Stigma, Self-concept, and Acceptance of cognitive impairment and Perceived control over health outcomes. These were interpreted and conceptualised using a modified health-related quality of life framework.

Following this, 103 people living with HIV with cognitive issues, from two HIV services in Brighton and London, participated in a questionnaire-based quantitative study. The domains identified were operationalised using existing domain-specific scales to quantitatively explore and validate our health-related quality of life framework. Clinical cut-offs confirmed poor health-related quality of life. Factor analysis corroborated the relevance of the domains identified and hierarchical linear regression confirmed that cognitive function significantly predicted health-related quality of life score. Furthermore, the inclusion of other domains into the regression model increased the predictive efficacy, explaining 56% of the variance in overall quality of life score.

Finally, we examined the psychometric properties (reliability, construct validity, convergent and discriminant validity, and content and face validity) of purposefully selected generic, HIV specific, and dementia-specific quality of life and health-related quality of patient reported outcome measures for use in people with HIV with cognitive impairment. Psychometric evaluation indicated when assessing health-related quality of life in this population the DEMQOL measure should be employed, along with a broader measure of generic or HIV-specific health-related quality of life.

The health-related quality of life in people with HIV and cognitive impairment could be improved and this thesis has identified important domains driving these experiences and provided recommendations for its assessment. This provides targets for intervention development and clinical consultation to maintain or improve health-related quality of life in people with HIV and cognitive impairment.
Date of AwardJan 2022
Original languageEnglish
Awarding Institution
  • University of Brighton
SupervisorJaime Vera (Supervisor), Stephanie Daley (Supervisor) & Sube Banerjee (Supervisor)

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