Measuring quality of life among people living with HIV: a systematic review of reviews

Vanessa Cooper, Jane Clatworthy, Richard Harding, Jennifer Whetham, Emerge Consortium, Adrian Brown, Agathe Leon, Eva Gonzalez, David Garcia, Daniel Lockhart, Ben Marent, Brian West, Cesar Caceres, Duncan Fatz, Ed Wallitt, Eduard Beck, Enrique Gomez, Eugenio Teofilo, Felipe Garcia, Flis Henwood, Goncalo Rodrigues, Jennifer Whetham, Josip Begovac, Koen Block, Ludwig Apers, Letitia Pereira, Margarida Borges, Mary Darking, Paloma Chausa, Sime Zekan, Steven Bremner, Steven Hoornaert, Sundhiya Mandalia, Vanessa Cooper, Jane Clatworthy, Richard Harding, Jennifer Whetham, Emerge Consortium, Adrian Brown, Agathe Leon, Eva Gonzalez, David Garcia, Daniel Lockhart, Ben Marent, Brian West, Cesar Caceres, Duncan Fatz, Ed Wallitt, Eduard Beck, Enrique Gomez, Eugenio Teofilo, Felipe Garcia, Flis Henwood, Goncalo Rodrigues, Jennifer Whetham, Josip Begovac, Koen Block, Ludwig Apers, Letitia Pereira, Margarida Borges, Mary Darking, Paloma Chausa, Sime Zekan, Steven Bremner, Steven Hoornaert, Sundhiya Mandalia

Abstract

Aim: A systematic review of reviews was conducted to identify and appraise brief measures of health-related quality of life (HRQoL) that have been used in peer-reviewed research with people living with HIV.

Methods: The review was conducted in two stages: 1) search of electronic databases to identify systematic reviews of tools used to measure HRQoL in adults living with HIV, published since the year 2000; 2) selection of HRQol scales from those identified in the reviews. Inclusion criteria included scales that could be self-administered in 10 min or less, covering at least 3 domains of quality of life (physical function, social/role function and mental/emotional function). For generic scales, inclusion criteria included the availability of normative data while for HIV-specific scales, patient input into the development of the scale was required.

Results: Ten reviews met the inclusion criteria. Nine generic scales met the inclusion criteria: the EuroQol five dimensions questionnaire (EQ-5D); Health Utilities Index; McGill Quality of Life questionnaire; Medical Outcomes Study (MOS) Short Form (SF)-12; SF-36; World Health Organisation Quality of Life (WHOQOL- BREF), Questions of Life Satisfaction (FLZM) and SF-20. Available psychometric data supported the EQ-5D and SF-36. Seven HIV-specific scales met the inclusion criteria: the AIDS Clinical Trials Group (ACTG)-21; HIV-QL-31; MOS-HIV; Multidimensional Quality of Life Questionnaire for Persons with HIV/AIDS (MQOL-HIV), PROQOL-HIV, Symptom Quality of Life Adherence (HIV-SQUAD) and the WHOQOL-HIV BREF. Of the HIV -specific measures, the MOS-HIV was considered to have the most well-established psychometric properties, however limitations identified in the reviews included insufficient input from people living with HIV in the development of the scale, cross-cultural relevance and continued applicability. Two relatively new measures, the WHOQOL-HIV BREF and PROQOL-HIV, were considered to have promising psychometric properties and may have more relevance to people living with HIV.

Conclusion: The findings highlight the need for further validation of HRQoL measures in people living with HIV. The choice of one measure over another is likely to be influenced by the purpose of the quality of life assessment and the domains of HRQoL that are most relevant to the specific research or clinical question.

Keywords: HIV; Quality of life; Reliability; Systematic review; Validity.

Conflict of interest statement

Ethics approval and consent to participate

No ethics approval was required for this systematic review.

Consent for publication

Not applicable.

Competing interests

This paper summarises independent research funded by European Union’s Horizon 2020 research and innovation programme. The authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Figures

Fig. 1
Fig. 1
PRISMA Flow diagram showing paper selection process
Fig. 2
Fig. 2
Flow diagram showing selection of generic measures
Fig. 3
Fig. 3
Flow diagram showing selection of HIV-specific measures

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