Quality of life in people with HIV and Neurocognitive Impairment

  • Research type

    Research Study

  • Full title

    Developing an evidence base for understanding quality of life in people living with HIV and neurocognitive impairment: Phase 1 - Exploring patient experiences in the South East and London (UK)

  • IRAS ID

    266773

  • Contact name

    Kate Alford

  • Contact email

    K.Alford2@bsms.ac.uk

  • Sponsor organisation

    University of Sussex

  • Duration of Study in the UK

    0 years, 6 months, 31 days

  • Research summary

    Neurocognitive disorders are a common issue impacting those living with human immunodeficiency virus (HIV). Effective antiretroviral treatment has lessen the severity but not the frequency of these impairments, with estimates of over 20% of people living with HIV (PLWH) having a neurocognitive impairment (NCI). NCI is likely to become an increasingly important issue as the HIV population ages. NCI in PLWH is associated with reduced employment, poorer medication adherence, lower mortality and is independently associated with significant reductions in perceived quality of life. Quality of life (QoL) is widely recognized as an essential end point in the disease management of chronic condition, such as HIV, with recent calls to include good quality of life as a ‘fourth 90’ in the 90-90-90 testing and treatment targets introduced by World Health Organisation in 2016. Despite research examining QoL in PLWH generally, few studies have examined this concept in PLWH who also have a cognitive disorder. Exploring the experiences of PLWH with NCI, and understanding factors influencing QoL in conditions impacting cognition is particularly important given the multiple areas of functioning affected and challenges patients likely face with regard to self-report.
    This study aims:
    1. To explore the experiences of PLWH with NCI using a qualitative methodology
    2. To understand the determinants of QoL, and there relationship to one another, in PLWH with NCI
    3. To use this data to develop a theoretical framework in which QoL in PLWH with NCI conceptualized
    It is anticipated that in exploring the experiences and identifying the components influencing QoL, and how they relate to one another, we will gain an understanding of NCI in PLWH which will inform the development of patient-reported outcome tools and assist with the development of interventions which have a ‘real-world’ benefit for this population.

  • REC name

    Yorkshire & The Humber - South Yorkshire Research Ethics Committee

  • REC reference

    19/YH/0356

  • Date of REC Opinion

    15 Oct 2019

  • REC opinion

    Favourable Opinion