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A Review of HIV-Specific Patient-Reported Outcome Measures

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Abstract

The use of patient-reported outcome (PRO) measures to provide added feedback to health providers is receiving interest as a means of improving clinical care and patient outcomes, and contributing to more patient-centered care. In human immunodeficiency virus (HIV), while PROs are used in research, their application in clinical practice has been limited despite their potential utility. PRO selection is an important consideration when contemplating their use. As past reviews of PROs in HIV have focused on particular areas (e.g. disability, satisfaction with care), a more comprehensive review could better inform on the available instruments and their scope. This article reviews HIV-specific PROs to produce an inventory and to identify the central concepts targeted over time. Seven databases were searched (HAPI, MEDLINE, PsychINFO, PubMed, EMBASE, CINAHL, Google Scholar), generating 14,794 records for evaluation. From these records, 117 HIV-specific PROs were identified and categorized based on a content analysis of their targeted concept: Health-Related Quality of Life (23; 20 %), ART and Adherence-Related Views and Experiences (19; 16 %), Healthcare-Related Views and Experiences (15; 13 %), Psychological Challenges (12; 10 %), Symptoms (12; 10 %), Psychological Resources (10; 9 %), HIV Self-Management and Self-Care (8; 7 %), HIV-Related Stigma (8; 7 %), Body and Facial Appearance (4; 3 %), Social Support (3; 3 %), Sexual and Reproductive Health (2; 2 %), and Disability (1; 1 %). This review highlights the variety and evolution of HIV-specific PROs, with the arrival of seven categories of PROs only after the advent of highly-active antiretroviral therapy. Our inventory also offers a useful resource. However, the interest of further HIV-specific PRO development should be explored in sexual health, which received little independent attention.

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Acknowledgments

David Lessard is the recipient of a Mitacs Accelerate Postdoctoral Internship Award, and Bertrand Lebouché is supported by a Research Scholar Award of the FRQS (Quebec Health Research Funds). We thank Ibtisam Mahmoud, Librarian of the McGill University Health Centre, and Genevieve Gore, a liaison Librarian for McGill University, for their help with the design of the database queries. We also thank the anonymous reviewers for their valuable comments.

Author contributions

Kim Engler led the review and wrote the manuscript. Davis Lessard actively participated in the review (see the manuscript for details) and repeatedly revised the manuscript. Bertrand Lebouché is the principal investigator of the I-Score Study (CTN283), the larger study of which this review was a component; he repeatedly revised the manuscript.

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Authors and Affiliations

  1. Chronic Viral Illness Service, Montreal Chest Institute, McGill University Health Centre, Local D02.4110, Glen Site, 1001 Décarie Boulevard, Montreal, QC, H4A 3J1, Canada

    Kim Engler, David Lessard & Bertrand Lebouché

  2. Research Institute, McGill University Health Centre, Montreal, QC, Canada

    Kim Engler & Bertrand Lebouché

  3. Department of Family Medicine, McGill University, Montreal, QC, Canada

    Kim Engler, David Lessard & Bertrand Lebouché

Authors
  1. Kim Engler
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  2. David Lessard
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  3. Bertrand Lebouché
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Correspondence to Kim Engler.

Ethics declarations

This review is part of the literature review phase of a larger study (the I-Score Study) led by Bertrand Lebouché which aims to develop a PRO measure for clinical use with HIV-positive patients receiving ART that will be based on patient-identified adherence barriers. The review received partial funding by the Canadian Institutes of Health Research’s HIV Clinical Trials Network (CTN 283), and is also supported in part by a research grant from the Investigator-Initiated Studies Program of Merck Canada, Inc. (IISP-53538). The I-Score Study received Research Ethics Board approval from the McGill University Health Centre (Study Code 14-229-PSY); however, this article does not contain any studies with human participants or animals performed by any of the authors. The opinions expressed therein are those of the authors and do not necessarily represent those of Merck Canada, Inc. or its affiliates or related companies.

Conflict of interest

Kim Engler, David Lessard, and Bertrand Lebouché declare that they have no conflicts of interest.

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Engler, K., Lessard, D. & Lebouché, B. A Review of HIV-Specific Patient-Reported Outcome Measures. Patient 10, 187–202 (2017). https://doi.org/10.1007/s40271-016-0195-7

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