Validity and Test-Retest Reliability of the Turkish Version of Spinal Muscular Atrophy Independence Scale - Upper Limb Module: A Comparison with Healthy Peers

Aims Spinal muscular atrophy (SMA) is a neurodegenerative disorder reducing independence in daily activities. The SMA Independence Scale Upper Extremity Module (SMAIS-ULM) evaluates upper limb independence in children with SMA. This study’s aim is to assess the adaptation of the Turkish SMAIS-ULM caregiver form in children aged 2–12 years, examine its association with motor function, and compare independence with healthy peers.Methods Parents of children with SMA and healthy peers (n = 94) completed the SMAIS-ULM. Gross motor function was assessed using the Expanded Hammersmith Functional Motor Scale (HFMS-Expanded), upper extremity function with the Revised Upper Limb Module (RULM). Reliability was examined via test–retest ICC, Cronbach’s α, and item–total correlations. Concurrent validity was assessed with Pearson correlations. Group differences were analyzed using Chi-square, Mann–Whitney U tests.Results The SMAIS-ULM demonstrated high reliability and a two-factor structure. Scores correlated strongly with RULM and moderately with HFMS-Expanded. Minimal ceiling effects were observed. Children with SMA scored significantly lower than healthy peers, indicating reduced upper limb independence.Conclusion The Turkish SMAIS-ULM is a reliable, valid, and clinically applicable tool for assessing upper limb independence in children with SMA aged 2–12 years. It provides a standardized measure suitable for clinical practice and research.