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

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.