A Review of Reviews of Patient-Reported Measures in Psychosis: Need to Consider Factors Affecting Equity and the Involvement of Patients.

Abstract

Background: Patient-reported measures are increasingly valued in psychosis care and research. For patient-reported measures to reflect patient perspectives, patients must be involved in developing them. Furthermore, their development and evaluation must consider sociodemographic characteristics influencing patient experiences and outcomes and measurement. As reviews reflect the state of the field and guide clinicians/researchers in selecting measures, our aim was to evaluate literature reviews of patient-reported measures on their consideration of factors affecting equity and patient involvement.

Study design: For this review of reviews, we searched 3 databases (MEDLINE, Embase, and PsycINFO) for reviews on patient-reported measures in psychosis. Two reviewers independently screened titles, abstracts, and full texts, and descriptively synthesized and appraised the quality of included reviews. Using Cochrane's PROGRESS-Plus and a Canadian equity framework, reviews were evaluated on their consideration of sociodemographic characteristics, accessibility, and patient involvement.

Study results: Of 10 reviews (6 systematic, 4 nonsystematic; 1111 studies; 313 measures), 6 limited their search to English. Barring 2 reviews that reported the age, gender, and countries of samples in included studies, the reviews did not extract/comment on population/sociodemographic characteristics. One commented on one measure's readability; none commented on the samples' literacy levels. Four reviews considered the availability of translations; only 1 evaluated cross-cultural validity. Only 2 considered the costs of measures. Only 1 evaluated patient involvement in developing patient-reported measures. One referenced equity frameworks/standards.

Conclusions: Reviews of patient-reported measures in psychosis demonstrate minimal attention to equity and patient involvement. We offer recommendations to strengthen patient-reported measures research by attending to equity, social determinants, and patient-centrism.