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.