Functional outcome measures for pediatric upper limb deficiencies with and without prostheses: A systematic review and appraisal.

Effective orthopedic care/rehabilitation for pediatric upper limb deficiencies (ULDs) requires understanding how function and prosthetic control progress as the child develops. Psychometrically sound outcome measures are imperative. This systematic review critically appraised the instruments available for assessing upper limb function among children with ULDs. PubMed, Embase, CINAHL, and Scopus were searched. Eligible studies evaluated instruments' validity, reliability, and/or responsiveness and included children under 18 years. Following PRISMA guidelines, multiple reviewers independently screened studies, extracted data, assessed risk of bias, and rated psychometrics and evidence quality by the COnsensus-based Standards for selection of health Measurement INstruments methodology. Reviewers screened 2513 studies; 19 reports describing 4 performance-based tests and 6 patient-reported outcome measures were included. An ideal outcome measure for pediatric ULDs does not yet exist. For clinicians/researchers seeking a standardized observational assessment, the Assessment of Capacity for Myoelectric Control (valid only for myoelectric prostheses) and Assisting Hand Assessment are the most promising options, showing the best feasibility and psychometrics. A modified Assisting Hand Assessment is under development for ULDs with or without prosthesis use. For clinicians/researchers seeking a more practical questionnaire that they can implement beyond the clinic, all existing options would benefit from revision and simplification. We provisionally recommend the 10-min, parent-reported Child Amputee Prosthetics Project-Functional Status Inventory. However, the preschooler version needs construct revisions, and all versions need reliability studies. Two well-known pediatric instruments, the Patient-Reported Outcomes Measurement Information System and Pediatric Outcomes Data Collection Instrument, are invalid for assessing upper limb function among patients with ULDs.