Affordable Access

deepdyve-link
Publisher Website

The involvement of people living with HIV in the development of HIV-specific or inclusive health instruments: a mixed methods review.

Authors
  • Lénárt, András1, 2
  • Engler, Kim2, 3, 4
  • Lessard, David1, 2, 3, 4
  • Toupin, Isabelle1, 2, 3, 4
  • Rodríguez, Charo1, 4
  • Lebouché, Bertrand1, 2, 3, 4
  • 1 Department of Family Medicine, McGill University, Montreal, Canada. , (Canada)
  • 2 Center for Outcomes Research & Evaluation, Research Institute, McGill University Health Centre, Montreal, Canada. , (Canada)
  • 3 Royal Victoria Hospital, Chronic Viral Illness Service, McGill University Health Centre, Montreal, Canada. , (Canada)
  • 4 Strategy for Patient-Oriented Research (SPOR) Mentorship Chair in Innovative Clinical Trials (Canadian Institutes of Health Research), Montreal, Canada. , (Canada)
Type
Published Article
Journal
AIDS care
Publication Date
Jul 01, 2020
Volume
32
Issue
7
Pages
801–810
Identifiers
DOI: 10.1080/09540121.2019.1653435
PMID: 31418301
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

Given recent emphasis on patient engagement in the choice and development of health measures to ensure their relevance, we examined the involvement of people living with HIV (PLHIV) in the creation of health measurement instruments that are HIV-specific or inclusive. A mixed studies review was conducted describing: 1) the sampling, recruitment and characteristics of involved PLHIV; 2) the methods and extent of their involvement; and 3) study author characterizations of this involvement. Five databases were searched in November 2015. Content and thematic analyses and a patient engagement framework guided the synthesis. Forty-one studies describing the development of thirty-nine instruments were reviewed. For many instruments, there was no reporting of the sampling method used for PLHIV involvement (87%), the recruitment setting (62%), the number of PLHIV involved (44%) or their characteristics (38%). Focus groups (38%) and interviews (36%) were the most common involvement methods. Involvement typically occurred at the patient engagement level of consultation (79%). Authors primarily characterized involvement as "contributing to instrument development" and, less frequently, as "a collaboration," "integral to instrument development" or "challenging." Patient engagement frameworks and standards for the content validation of patient-reported measures offer resources for systematic reporting, contextualizing involvement, diversifying approaches, and documenting their potentialities.

Report this publication

Statistics

Seen <100 times