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How is Quality of Life with HIV Measured?

A recent systematic review conducted by British researchers evaluated different measures of health-related quality of life for those living a life with HIV.

While the introduction of combination antiretroviral therapy (ART) has significantly changed the prognosis of HIV from a terminal disease to a chronic condition, a life with HIV continues to result in a lower health-related quality of life (HRQoL) for HIV-positive individuals compared to the general population. In countries where treatment is widely available, individuals with HIV can live a near-normal life. However, previous research shows evidence that HIV positive individuals HRQoL may still be impacted by social circumstances, relationship issues, stigma, underlying infections and comorbidities.

Pivotal to the healthcare and support provided to HIV patients is the aim of improving each patient’s quality of life. In 1946 the World Health Organisation stated: “health is a state of complete physical, mental and social well-being”. HRQoL is measured by the impact health has on an individual’s perception of their well-being. Therefore, to measure one’s health-related quality of life physical, mental, and social factors are considered, as well as other factors like independence, spirituality, and environment.

To effectively evaluate new treatments and health care interventions for HIV patients, along with clinical endpoints such as the progression to AIDS, HRQoL measurements are required. Previous research has used a variety of tools to evaluate HRQoL. However, given that the research had various aims, for instance, measures were only applied in a specific context such as sub-Saharan Africa, the research and reviews were unable to provide an adequate routine clinical assessment for HRQoL for all HIV patients. Researchers in the United Kingdom conducted a systemic review of reviews to pinpoint the best method for evaluating HRQoL. Their findings were published in Health and Quality of Life Outcomes.

The review was split into two stages, where first they searched for previously published (since 2000) systemic reviews which used tools to measure HRQoL in adults living a life with HIV. The second part of the review involved the selection of HRQoL scales which were identified in the first stage. For the HRQoL scale to be included in their review, criteria included scales which were pragmatic yet comprehensive tools such as those which could be self-administered in 10 minutes or less and incorporated at least three factors typically used to measure quality of life such as physical, social, and mental function. Inclusion criteria for generic measures included the availability of normative data which enabled a comparison between the general population and people with HIV.

Only ten reviews which met the selection criteria and nine which met the generic criteria were identified and included in this systemic review. Out of the ten reviews, the HRQoL HIV-specific scale which was considered to have the most well-established psychometric properties was the Medical Outcomes Study, which is the most widely used HIV-specific measure. Limitations of the Medical Outcomes Study were noted by the researchers and included concerns that when developing scales to measure HRQoL, there was insufficient input from people living their life with HIV, as well as limited cross-cultural relevance. Also, the continued applicability was questioned since the introduction of ART.

Two newer methods which have been developed and were included in the review which have promising psychometric properties and good internal consistency also are the World Health Organisation Quality of Life – BREF and the Patient Reported Outcomes Quality of Life – HIV questionnaires. These measures appear to have more relevance to people who are currently living a life with HIV.

This review identified that when choosing an HRQoL measure for patients living with HIV, the choice will likely be dependent upon the purpose of the assessment, whether there is a specific clinical or research question, including the impact of a potential new treatment or intervention. To ensure the quality of the outcomes reported, it is essential that the measures used are reliable and meet a wide range of requirements, as well as being simple, easy to understand and interpret.

Several general and HIV-specific tools to measure health-related quality of life were identified as pragmatic and efficient tools for assessing both the introduction of interventions and clinical care for patients living their life with HIV. However, given the choice of measure used was primarily influenced by the context is was to be used in, further validation of health-related quality of life HIV-specific measures are needed.

Written by Lacey Hizartzidis, PhD

Reference: Cooper V, Clatworthy J, Harding R, Whetham J; Emerge Consortium. Measuring quality of life among people living with HIV: a systematic review of reviews. Health Qual Life Outcomes. 2017 Nov 15;15(1):220. doi: 10.1186/s12955-017-0778-6.



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