Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review

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Abstract

Objective

To identify and assess the psychometric properties of patient-reported outcome measures (PROMs) of health-related quality of life (HRQoL) in people living with HIV (PLWH).

Methods

Nine databases were searched from January 1996 to October 2020. Methodological quality was assessed by using the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN) Risk of Bias Checklist. We used the COSMIN criteria to summarize and rate the psychometric properties of each PROM. A modified Grading, Recommendations, Assessment, Development, and Evaluation (GRADE) system was used to assess the certainty of evidence.

Results

Sixty-nine studies reported on the psychometric properties of 30 identified instruments. All studies were considered to have adequate methodological quality in terms of content validity, construct validity, and internal consistency. Limited information was retrieved on cross-cultural validity, criterion validity, reliability, hypothesis testing, and responsiveness. High-quality evidence on psychometric properties was provided for the Medical Outcomes Study HIV Health Survey (MOS-HIV), the brief version of the World Health Organization's Quality of Life Instrument in HIV Infection (WHOQoL-HIV-BREF), 36-Item Short Form Survey (SF-36), Multidimensional Quality of Life Questionnaire for Persons with HIV/AIDS (MQoL-HIV), and WHOQoL-HIV.

Conclusions

The findings from the included studies highlighted that among HIV-specific and generic HRQoL PROMs, MOS-HIV, WHOQoL-HIV-BREF, SF-36, MQoL-HIV, and WHOQoL-HIV are strongly recommended to evaluate HRQoL in PLWH in research and clinics based on the specific aims of assessments and the response burden for participants.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12955-021-01910-w.

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How to select outcome measurement instruments for outcomes included in a “Core Outcome Set” – a practical guideline

Cecilia Prinsen, Sunita Vohra, Michael Rose … (2016)

Background In cooperation with the Core Outcome Measures in Effectiveness Trials (COMET) initiative, the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) initiative aimed to develop a guideline on how to select outcome measurement instruments for outcomes (i.e., constructs or domains) included in a “Core Outcome Set” (COS). A COS is an agreed minimum set of outcomes that should be measured and reported in all clinical trials of a specific disease or trial population. Methods Informed by a literature review to identify potentially relevant tasks on outcome measurement instrument selection, a Delphi study was performed among a panel of international experts, representing diverse stakeholders. In three consecutive rounds, panelists were asked to rate the importance of different tasks in the selection of outcome measurement instruments, to justify their choices, and to add other relevant tasks. Consensus was defined as being achieved when 70 % or more of the panelists agreed and when fewer than 15 % of the panelists disagreed. Results Of the 481 invited experts, 120 agreed to participate of whom 95 (79 %) completed the first Delphi questionnaire. We reached consensus on four main steps in the selection of outcome measurement instruments for COS: Step 1, conceptual considerations; Step 2, finding existing outcome measurement instruments, by means of a systematic review and/or a literature search; Step 3, quality assessment of outcome measurement instruments, by means of the evaluation of the measurement properties and feasibility aspects of outcome measurement instruments; and Step 4, generic recommendations on the selection of outcome measurement instruments for outcomes included in a COS (consensus ranged from 70 to 99 %). Conclusions This study resulted in a consensus-based guideline on the methods for selecting outcome measurement instruments for outcomes included in a COS. This guideline can be used by COS developers in defining how to measure core outcomes. Electronic supplementary material The online version of this article (doi:10.1186/s13063-016-1555-2) contains supplementary material, which is available to authorized users.

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Beyond viral suppression of HIV – the new quality of life frontier

Jeffrey V Lazarus, Kelly Safreed-Harmon, Simon E. Barton … (2016)

Background In 2016, the World Health Organization (WHO) adopted a new Global Health Sector Strategy on HIV for 2016–2021. It establishes 15 ambitious targets, including the ‘90-90-90’ target calling on health systems to reduce under-diagnosis of HIV, treat a greater number of those diagnosed, and ensure that those being treated achieve viral suppression. Discussion The WHO strategy calls for person-centered chronic care for people living with HIV (PLHIV), implicitly acknowledging that viral suppression is not the ultimate goal of treatment. However, it stops short of providing an explicit target for health-related quality of life. It thus fails to take into account the needs of PLHIV who have achieved viral suppression but still must contend with other intense challenges such as serious non-communicable diseases, depression, anxiety, financial stress, and experiences of or apprehension about HIV-related discrimination. We propose adding a ‘fourth 90’ to the testing and treatment target: ensure that 90 % of people with viral load suppression have good health-related quality of life. The new target would expand the continuum-of-services paradigm beyond the existing endpoint of viral suppression. Good health-related quality of life for PLHIV entails attention to two domains: comorbidities and self-perceived quality of life. Conclusions Health systems everywhere need to become more integrated and more people-centered to successfully meet the needs of virally suppressed PLHIV. By doing so, these systems can better meet the needs of all of their constituents – regardless of HIV status – in an era when many populations worldwide are living much longer with multiple comorbidities.

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Utility approach to measuring health-related quality of life.

G W Torrance (1986)

Quality of life is a broad concept that incorporates all aspects of an individual's existence. Health-related quality of life is a subset relating only to the health domain of that existence. The utility approach can be used to measure a single cardinal value, usually between 0 and 1, that reflects the health-related quality of life of the individual at a particular point in time. The utility approach is founded in modern utility theory, a normative rational model of decision-making under uncertainty. The measurement techniques that have been used include standard gamble, time trade-off, and rating scales. The techniques are described in the paper and compared in terms of their acceptability to subjects, reliability, precision, validity, and ease of use. It is concluded that the utility approach is beyond the experimental stage, and is now a viable alternative for investigators to use in measuring health-related quality of life.

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Author and article information

Contributors

Zheng Zhu:

ORCID: http://orcid.org/0000-0001-9651-8311

zhengzhu@fudan.edu.cn

Yan Hu: huyan@fudan.edu.cn

Journal

Journal ID (nlm-ta): Health Qual Life Outcomes

Journal ID (iso-abbrev): Health Qual Life Outcomes

Title: Health and Quality of Life Outcomes

Publisher: BioMed Central (London )

ISSN (Electronic): 1477-7525

Publication date (Electronic): 10 January 2022

Publication date PMC-release: 10 January 2022

Publication date Collection: 2022

Volume: 20

Electronic Location Identifier: 5

Affiliations

[1 ]GRID grid.8547.e, ISNI 0000 0001 0125 2443, Fudan University School of Public Health, ; Shanghai, China

[2 ]GRID grid.8547.e, ISNI 0000 0001 0125 2443, School of Nursing, Fudan University, ; Shanghai, China

[3 ]GRID grid.8547.e, ISNI 0000 0001 0125 2443, Fudan University Centre for Evidence-Based Nursing: A Joanna Briggs Institute Centre of Excellence, ; 305 Fenglin Rd, Shanghai, 200032 China

[4 ]GRID grid.11135.37, ISNI 0000 0001 2256 9319, Peking University School of Nursing, ; Beijing, China

[5 ]GRID grid.470110.3, ISNI 0000 0004 1770 0943, Shanghai Public Health Clinical Center, ; Shanghai, China

Author information

Zheng Zhu http://orcid.org/0000-0001-9651-8311

Article

Publisher ID: 1910

DOI: 10.1186/s12955-021-01910-w

PMC ID: 8744327

PubMed ID: 35012574

SO-VID: 18e99223-bcfb-4c99-8057-0fb4632a1f1d

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Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 7 July 2021

Date accepted : 14 December 2021

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ScienceOpen disciplines: Health & Social care

Keywords: hiv,aids,quality of life,prom,systematic review

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ScienceOpen disciplines: Health & Social care

Keywords: hiv, aids, quality of life, prom, systematic review

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Psychometric properties of self-reported measures of health-related quality of life in people living with HIV: a systematic review

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Abstract

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Conclusions

Supplementary Information

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Annual Reviews HIV/AIDS: Public Health and Society

Most cited references 81

How to select outcome measurement instruments for outcomes included in a “Core Outcome Set” – a practical guideline

Beyond viral suppression of HIV – the new quality of life frontier

Utility approach to measuring health-related quality of life.

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