Measuring quality of life among people living with HIV

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Why measure quality of life among people living with HIV

There are many reasons we might want to measure quality of life (QoL) among people living with HIV; for example, to support:

  • Health and community services to value and track quality of life alongside clinical markers
  • Improved discussion between people living with HIV and their clinicians or support staff
  • Health and community programs to identify those people living with HIV who may need additional support
  • National research to measure if we are achieving QoL goals for people living with HIV
  • The generation of evidence that further or more targeted work needed to improve QoL among people living with HIV

In order to measure quality of life (QoL) among people living with HIV, we need a tool that was designed for that purpose.

Firstly, this is because quality of life (QoL) is about how a person feels about their position in life. We cannot know how a person feels unless we ask them the right questions.

Secondly, HIV status and HIV-related stigma and discrimination impact on QoL in highly specific ways. So, it is only by asking specific questions about these unique experiences that we can gain an understanding of a person living with HIV’s QoL.

The PozQoL project worked extensively with people living with HIV to identify four HRQoL domains that they found important:

  • Psychological
  • Social
  • Health concerns
  • Functional

The psychological domain includes mood, coping, hope for or fear of the future, and self-worth.

The social domain is about personal and social life. It includes feelings of belonging, support, and social stigma.

The health concerns domain is about how someone feels about their own health. It includes health-related worries and energy. It also includes how easy they find it to manage HIV and HIV treatment.

The functional domain is about whether a person feels that they can live what they would call a ‘normal’ life. It includes independence, meaningful occupation, and good standard of living.

The PozQoL scale measures HRQoL by asking 13 questions across these four domains. PozQoL scores can be calculated separately for each domain, or as an average across all domains.

Working through the PozQoL questions with patients or clients helps clinicians and support workers to better understand how their patient or client is faring. Because there are only 13 questions, the process is fast and simple. Service providers can gain immediate insights into a client’s health and needs. This can lead to improved quality of care and better health outcomes for people living with HIV.