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Selecting Patient-Reported Outcome Measures for Pediatric Upper Extremity Function: A Systematic Review
Miguel Fiandeiro1, Holly Cordray1, John R Vaile2
1Perelman School of Medicine at the University of Pennsylvania.
Insights
Selecting patient-reported outcome measures (PROMs) for pediatric upper extremity function is crucial. The Pediatric Outcomes Data Collection Instrument (PODCI) is recommended, with specific tools for infants and certain conditions.
Area of Science:
- Orthopedics
- Pediatric Rehabilitation
- Health Outcomes Research
Background:
- Patient-reported outcome measures (PROMs) are vital for assessing pediatric upper extremity function.
- Limited guidance exists for selecting appropriate PROMs, leading to potential misuse beyond validated scopes.
- This systematic review addresses the need for evidence-based PROM selection in pediatric upper extremity care.
Purpose of the Study:
- To systematically review and analyze the content, readability, and psychometric properties of existing PROMs for pediatric upper extremity function.
- To provide clinicians with evidence to guide the selection of validated and appropriate PROMs for pediatric patients.
Main Methods:
- A comprehensive search of PubMed, Embase, CINAHL, and Scopus was conducted.
- Studies evaluating psychometric properties of global upper extremity function PROMs in pediatric populations were included.
- PRISMA guidelines were followed, with data extraction, risk of bias assessment, and psychometric rating using COSMIN standards.
Main Results:
- Forty-four reports on nine PROMs were included after screening 2513 studies.
- The Pediatric Outcomes Data Collection Instrument (PODCI) demonstrated strong validity and responsiveness across diverse conditions.
- Specific PROMs like UE-CP-PRO (cerebral palsy), IMAL (infants), and PROMIS-UE (potential) were highlighted for particular uses.
Conclusions:
- The PODCI, UE-CP-PRO, and IMAL are recommended for specific clinical applications.
- Further validation of the PROMIS-UE computerized adaptive test and short form is encouraged as alternatives to PODCI.
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.
