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

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.

KEYWORDS:

• HIV
• measurement
• review
• patient involvement
• patient engagement

Acknowledgements

BL is a holder of a Strategy for Patient-Oriented Research (SPOR) Mentorship Chair in Innovative Clinical Trials awarded by the Canadian Institutes of Health Research (www.cihr-irsc.gc.ca) (grant number 383427), in which CR is a mentor. KE is a young investigator and DL and IT are postdoctoral fellows of this Chair. AL was a recipient of a MITACS Accelerate internship grant (grant number IT05857) and a McGill University Family Medicine bursary. This study was conducted as a part of a larger study (The I-Score Study) which is supported, in part, by the CIHR Canadian HIV Trials Network (grant number CTN 283), the CIHR SPOR Quebec Support Unit (grant number M006), and by a research grant from the Merck Canada Inc. Investigator Initiated Studies Program (grant number IISP-53538). The opinions expressed in this manuscript are those of the authors and do not necessarily represent those of Merck Canada Inc. or its affiliates or related companies.

The authors would like to thank Genevieve Gore, librarian, McGill University, for her assistance in developing the search strategy.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by Canadian HIV Trials Network, Canadian Institutes of Health Research: [Grant Number CTN 283]; Mitacs Accelerate internship grant: [Grant Number IT05857]; Merck Canada Inc: [Grant Number IISP-53538].