Selecting Patient-Reported Outcome Measures for Pediatric Upper Extremity Function: A Systematic Review.

Background: Patient-reported outcome measures (PROMs) are important in understanding pediatric upper extremity outcomes. Little guidance is available to help clinicians select appropriate PROMs, which are often used beyond their scope of validation. This systematic review analyzed the content, readability, and psychometrics of existing PROMs of pediatric upper extremity function.

Methods: PubMed, Embase, CINAHL, and Scopus were searched. Eligible studies evaluated psychometrics of global upper extremity function PROMs in pediatric patients. Following PRISMA guidelines, 2 reviewers screened studies, extracted data, assessed risk of bias, and rated psychometrics using the COnsensus-based Standards for selection of health Measurement INstruments (COSMIN). Content was analyzed using the Occupational Therapy Practice Framework and well-established readability indices.

Results: Reviewers screened 2513 studies; 44 reports on 9 PROMs were included. The Pediatric Outcomes Data Collection Instrument (PODCI) showed strong evidence of validity and responsiveness for the widest range of conditions, covered all upper extremity functional categories and occupational domains, and easily achieved the American Medical Association's readability standards. The Upper-Extremity Cerebral Palsy Profile of Health and Function Computerized Adaptive Test (UE-CP-PRO) showed stronger psychometrics for cerebral palsy and brachial plexus birth injury. The Infant Motor Activity Log (IMAL) is the strongest option for infants under 2 years old. The Patient-Reported Outcomes Measurement Information System Upper Extremity Module (PROMIS-UE) has strong potential but requires more diagnosis-specific validation.

Conclusions: We recommend the PODCI, UE-CP-PRO, and IMAL as outlined. We also urge further validation of the PROMIS-UE computerized adaptive test and short form as shorter, more customizable alternatives to the PODCI.

Level of evidence: Level II-systematic review of level I and level II studies.