Associations among sleep quality, psychosocial functioning, and health-related quality of life in children with Duchenne muscular dystrophy

Objectives: Duchenne Muscular Dystrophy (DMD) is the most common genetically caused neuromuscular disorder. Previous studies in western patient samples have found issues in some aspects of psychosocial functioning but there has been no comprehensive study on sleep quality and no study on the associations among sleep quality, psychosocial functioning, and health-related quality of life (HRQOL). We aimed to provide some preliminary data for the role of sleep in psychosocial outcomes and HRQOL in patients with DMD.
Methods: Fifteenboys with DMD and 15 unaffected boys, case-matched on age, were recruited in Hong Kong together with their parents from September 2013 to March 2014. Information was collected through the completion of the Children’s Sleep Habits Questionnaire (CSHQ), the Child Behavior Checklist (CBCL), the self-reported and parent proxy-reported Pediatric Quality of Life (PedsQL) modules.
Results and conclusion: Parents of 2-12 year-old children with DMD perceived lower HRQOL in their children as compared to their healthy peers, with the 8-12 years old being the most affected age group characterized by lower total HRQOL, physical QOL, and social QOL. Close to three-quarters of patients had significant sleep problems, which were significantly correlated with both patient-reported and parent-reported HRQOL in children with DMD as well as with many emotional-behavioral outcomes on the CBCL.
This study was the first to investigate sleep quality, psychosocial functioning, and HRQOL in a Chinese DMD sample and also the first to demonstrate the associations between sleep variables and the QOL and psychosocial outcomes in DMD populations. Our findings suggest that routine monitoring and intervention for sleep-related conditions should be considered in clinical service for children with DMD. Copyright © 2016 The 4th International Pediatric Sleep Association Congress.