Choosing the Most Appropriate Patient-Reported Outcome Measures for Hand Function: A Guide for Pediatric Hand Surgeons

Abstract

Consensus is lacking on a patient-reported outcome measure (PROM) for pediatric hand surgery; many studies use unvalidated ad-hoc surveys. To guide selection, this systematic review searched PubMed, Embase, CINAHL, and Scopus for studies evaluating hand-function-focused PROMs among pediatric patients. According to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses, reviewers independently screened studies, extracted data, assessed quality, and rated psychometrics using the COnsensus-based Standards for selection of health Measurement INstruments. Content analyses used the Occupational Therapy Practice Framework, hand therapist expertise, and readability indices. Thirty-three reports on 9 PROMs were included. Existing validation covers few pediatric hand conditions, notably excluding hand trauma and nearly all congenital differences. The Upper-Extremity Cerebral Palsy Profile of Health and Function Computerized Adaptive Test (UE-CP-PRO) and ABILHAND-Kids are the strongest candidates for generating a gold-standard PROM. Both have good evidence of responsiveness to surgical outcomes. With the highest-quality validity evidence for the broadest age range, the UE-CP-PRO covers all hand function categories and relevant occupational domains; ABILHAND-Kids covers nearly all. Both failed the American Medical Association’s readability standard. We provisionally recommend the UE-CP-PRO or ABILHAND-Kids for pediatric hand surgery outcomes. We encourage revising these measures and/or developing a more comprehensive PROM, incorporating adaptive condition-specific content and prioritizing readability to support child-reporting.