HIV-Specific Reported Outcome Measures: Systematic Review of Psychometric Properties

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Abstract

Background

The management of people living with HIV and AIDS is multidimensional and complex. Using patient-reported outcome measures (PROMs) has been increasingly recognized to be the key factor for providing patient-centered health care to meet the lifelong needs of people living with HIV and AIDS from diagnosis to death. However, there is currently no consensus on a PROM recommended for health care providers and researchers to assess health outcomes in people living with HIV and AIDS.

Objective

The purpose of this systematic review was to summarize and categorize the available validated HIV-specific PROMs in adults living with HIV and AIDS and to assess these PROMs using the Consensus-Based Standards for the Selection of Health Measurement Instruments (COSMIN) methodology.

Methods

This systematic review followed the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. A literature search of 3 recommended databases (PubMed, Embase, and PsychINFO) was conducted on January 15, 2021. Studies were included if they assessed any psychometric property of HIV-specific PROMs in adults living with HIV and AIDS and met the eligibility criteria. The PROMs were assessed for 9 psychometric properties, evaluated in each included study following the COSMIN methodology by assessing the following: the methodological quality assessed using the COSMIN risk of bias checklist; overall rating of results; level of evidence assessed using the modified Grading of Recommendations, Assessment, Development, and Evaluation approach; and level of recommendation.

Results

A total of 88 PROMs classified into 8 categories, assessing the psychometric properties of PROMs for adults living with HIV and AIDS, were identified in 152 studies including 79,213 people living with HIV and AIDS. The psychometric properties of most included PROMs were rated with insufficient evidence. The PROMs that received class A recommendation were the Poz Quality of Life, HIV Symptom Index or Symptoms Distress Module of the Adult AIDS Clinical Trial Group, and People Living with HIV Resilience Scale. In addition, because of a lack of evidence, recommendations regarding use could not be made for most of the remaining assessed PROMs (received class B recommendation).

Conclusions

This systematic review recommends 3 PROMs to assess health outcomes in adults living with HIV and AIDS. However, all these PROMs have some shortcomings. In addition, most of the included PROMs do not have sufficient evidence for assessing their psychometric properties and require a more comprehensive validation of the psychometric properties in the future to provide more scientific evidence. Thus, our findings may provide a reference for the selection of high-quality HIV-specific PROMs by health care providers and researchers for clinical practice and research.

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Most cited references 221

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This paper presents a general statistical methodology for the analysis of multivariate categorical data arising from observer reliability studies. The procedure essentially involves the construction of functions of the observed proportions which are directed at the extent to which the observers agree among themselves and the construction of test statistics for hypotheses involving these functions. Tests for interobserver bias are presented in terms of first-order marginal homogeneity and measures of interobserver agreement are developed as generalized kappa-type statistics. These procedures are illustrated with a clinical diagnosis example from the epidemiological literature.

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COSMIN guideline for systematic reviews of patient-reported outcome measures

C. A. C. Prinsen, L. Mokkink, L Bouter … (2018)

Purpose Systematic reviews of patient-reported outcome measures (PROMs) differ from reviews of interventions and diagnostic test accuracy studies and are complex. In fact, conducting a review of one or more PROMs comprises of multiple reviews (i.e., one review for each measurement property of each PROM). In the absence of guidance specifically designed for reviews on measurement properties, our aim was to develop a guideline for conducting systematic reviews of PROMs. Methods Based on literature reviews and expert opinions, and in concordance with existing guidelines, the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) steering committee developed a guideline for systematic reviews of PROMs. Results A consecutive ten-step procedure for conducting a systematic review of PROMs is proposed. Steps 1–4 concern preparing and performing the literature search, and selecting relevant studies. Steps 5–8 concern the evaluation of the quality of the eligible studies, the measurement properties, and the interpretability and feasibility aspects. Steps 9 and 10 concern formulating recommendations and reporting the systematic review. Conclusions The COSMIN guideline for systematic reviews of PROMs includes methodology to combine the methodological quality of studies on measurement properties with the quality of the PROM itself (i.e., its measurement properties). This enables reviewers to draw transparent conclusions and making evidence-based recommendations on the quality of PROMs, and supports the evidence-based selection of PROMs for use in research and in clinical practice.

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COSMIN Risk of Bias checklist for systematic reviews of Patient-Reported Outcome Measures

L. Mokkink, H. C. W. de Vet, C. A. C. Prinsen … (2017)

Purpose The original COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was developed to assess the methodological quality of single studies on measurement properties of Patient-Reported Outcome Measures (PROMs). Now it is our aim to adapt the COSMIN checklist and its four-point rating system into a version exclusively for use in systematic reviews of PROMs, aiming to assess risk of bias of studies on measurement properties. Methods For each standard (i.e., a design requirement or preferred statistical method), it was discussed within the COSMIN steering committee if and how it should be adapted. The adapted checklist was pilot-tested to strengthen content validity in a systematic review on the quality of PROMs for patients with hand osteoarthritis. Results Most important changes were the reordering of the measurement properties to be assessed in a systematic review of PROMs; the deletion of standards that concerned reporting issues and standards that not necessarily lead to biased results; the integration of standards on general requirements for studies on item response theory with standards for specific measurement properties; the recommendation to the review team to specify hypotheses for construct validity and responsiveness in advance, and subsequently the removal of the standards about formulating hypotheses; and the change in the labels of the four-point rating system. Conclusions The COSMIN Risk of Bias checklist was developed exclusively for use in systematic reviews of PROMs to distinguish this application from other purposes of assessing the methodological quality of studies on measurement properties, such as guidance for designing or reporting a study on the measurement properties. Electronic supplementary material The online version of this article (10.1007/s11136-017-1765-4) contains supplementary material, which is available to authorized users.

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Author and article information

Contributors

Bo Qu:

ORCID: https://orcid.org/0000-0003-2526-9690

School of Public HealthChina Medical UniversityNo.77 Puhe RoadShenyang North New AreaShenyang, 110122China86 18900910198qubo6666@163.com

Journal

Journal ID (nlm-ta): JMIR Public Health Surveill

Journal ID (iso-abbrev): JMIR Public Health Surveill

Journal ID (publisher-id): JPH

Title: JMIR Public Health and Surveillance

Publisher: JMIR Publications (Toronto, Canada )

ISSN (Electronic): 2369-2960

Publication date Collection: December 2022

Publication date (Electronic): 8 December 2022

Volume: 8

Issue: 12

Electronic Location Identifier: e39015

Affiliations

[1 ] Institute for International Health Professions Education and Research China Medical University Shenyang China

[2 ] Administration Department of Nosocomial Infection Southwest Hospital Third Military Medical University Chongqing China

[3 ] School of Public Health China Medical University Shenyang China

Author notes

Corresponding Author: Bo Qu qubo6666@ 123456163.com

Author information

Ziqi Wang https://orcid.org/0000-0001-7324-5808

Yaxin Zhu https://orcid.org/0000-0001-8779-4218

Xiyu Duan https://orcid.org/0000-0002-2103-3296

Hao Kang https://orcid.org/0000-0002-4918-9938

Bo Qu https://orcid.org/0000-0003-2526-9690

Article

Publisher ID: v8i12e39015

DOI: 10.2196/39015

PMC ID: 9782451

PubMed ID: 36222289

SO-VID: 8f355b0a-edba-4113-bd2b-9320ad9e3b70

License:

This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Public Health and Surveillance, is properly cited. The complete bibliographic information, a link to the original publication on https://publichealth.jmir.org, as well as this copyright and license information must be included.

History

Date received : 25 April 2022

Date revision requested : 26 June 2022

Date revision received : 3 August 2022

Date accepted : 11 October 2022

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