Development and Psychometric Evaluation of the Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD) Questionnaire in Children with Duchenne Muscular Dystrophy

Objective: To adapt the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) to develop an outcome measure that reflects the health-related priorities of the DMD population and to test the psychometric properties of the resulting outcome measure. Method: Interviews with children with DMD and their primary caregivers followed by surveys with healthcare professionals informed the adaptation of the CPCHILD and sensibility evaluation of the new measure, the Muscular Dystrophy Child Health Index of Life with Disabilities (MDCHILD). Internal consistency, test-retest reliability, and construct validity of the MDCHILD were evaluated. Results: Instructions, scales and items were modified due to the input of stakeholders. The MDCHILD consists of 47 items over 7 domains. The MDCHILD demonstrated good internal consistency, excellent test-retest reliability, and strong evidence of construct validity. Conclusion: The MDCHILD is a promising outcome measure of health-related priorities for children with DMD.M.Sc.2018-12-15 00:00:0