Assessing Functional Outcomes of Children With Muscular Dystrophy and Scoliosis: The Muscular Dystrophy Spine Questionnaire

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Abstract

Background:

The purpose of this study was to develop a valid and reliable scale to evaluate the symptoms and functional abilities important to children with scoliosis and muscular dystrophy and their parents.

Methods:

Eighty-five items were generated from a review of the literature and interviews with clinicians, parents, and children with muscular dystrophy and scoliosis. Items were reviewed and rated in terms of "importance" and "severity" by the children and their parents. The foremost 29 items were formatted into a self-administered questionnaire.

Results:

The questionnaire, completed 2 weeks apart, demonstrated "excellent" test-retest reliability (intraclass correlation coefficient = 0.97). Construct validity was established through correlations with forced vital capacity (r = 0.46; P = 0.02), the Activities Scale for Kids (r = 0.40; P = 0.04), and the Pediatric Outcomes Data Collection Questionnaire (r = 0.72; P = 0.00).

Conclusions:

In conclusion, the Muscular Dystrophy Spine Questionnaire is a valid and reliable questionnaire designed to assess the outcomes of treatment in children with muscular dystrophy and scoliosis.

Level of Evidence or Clinical Relevance:

Prognostic level 2

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