Patient-Reported Experience Measures in Pediatric Healthcare—A Rapid Evidence Assessment

Abstract

This study aimed to describe what is known in the scientific literature about patient-reported experience measures (PREMs) in pediatric healthcare and identify areas for further exploration. PubMed, Web of Science, CINAHL, Google Scholar, COCHRANE, and SveMed+ combined with free text search in FireFox and Safari web browsers using Medical Subject Headings terms were used. Outcomes of interest were patient experience and measures of these constructs. Of the 316 studies identified, 68 met the inclusion criteria. Forty-eight studies (72%) were published between 2015 and 2020 and more than half (53%) were published in Europe. Most studies of PREMs in pediatric healthcare included adult proxies as participants. Seventy-eight percent of studies consisted of > 100 participants. Thirty-six studies (53%) were quantitative studies, 26 (38%) were evaluative studies of patient experience measures, and 6 (9%) were qualitative in design. Three hundred eleven domains were identified and further categorized into 14 domain areas. This research is important because it aims to amplify the voices of children in healthcare and establish a foundation for developing validated pediatric-PREMs that is grounded in children's firsthand experiences of care, rather than relying primarily on proxy accounts.