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Choosing the Most Appropriate Patient-Reported Outcome Measures for Hand Function: A Guide for Pediatric Hand
Holly Cordray1, Miguel Fiandeiro1, Sarah L Struble2
1Perelman School of Medicine at the University of Pennsylvania, Philadelphia, USA.
Insights
Finding the best patient-reported outcome measure (PROM) for pediatric hand surgery is challenging. The Upper-Extremity Cerebral Palsy Profile of Health and Function Computerized Adaptive Test (UE-CP-PRO) and ABILHAND-Kids show promise but need improvement.
Area of Science:
- Pediatric Orthopedics
- Rehabilitation Medicine
- Health Outcomes Research
Background:
- Lack of consensus on validated patient-reported outcome measures (PROMs) for pediatric hand surgery.
- Frequent use of unvalidated ad-hoc surveys in current practice.
- Need for standardized outcome assessment in pediatric hand surgery.
Purpose of the Study:
- To systematically review and evaluate hand-function-focused PROMs for pediatric patients.
- To identify the most suitable PROMs for assessing outcomes in pediatric hand surgery.
- To guide the selection of a gold-standard PROM for this population.
Main Methods:
- Systematic literature search of PubMed, Embase, CINAHL, and Scopus.
- Independent study screening, data extraction, and quality assessment.
- Psychometric evaluation using COnsensus-based Standards for selection of health Measurement INstruments (COSMIN).
- Content analysis incorporating Occupational Therapy Practice Framework and readability indices.
Main Results:
- Thirty-three reports on 9 PROMs were included; limited validation for specific pediatric hand conditions (e.g., trauma, congenital differences).
- The Upper-Extremity Cerebral Palsy Profile of Health and Function Computerized Adaptive Test (UE-CP-PRO) and ABILHAND-Kids demonstrated strong evidence of responsiveness to surgical outcomes.
- Both UE-CP-PRO and ABILHAND-Kids exhibit high-quality validity for a broad age range and cover most hand function/occupational domains but failed readability standards.
Conclusions:
- The UE-CP-PRO and ABILHAND-Kids are provisionally recommended as the strongest candidates for pediatric hand surgery outcomes.
- Further revision of these measures is encouraged, focusing on comprehensive content, condition-specific adaptations, and improved readability for child self-reporting.
- Development of a more inclusive PROM is warranted to address current limitations.
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.
