title: Factors Associated With Health-Related Quality of Life in Children With Duchenne Muscular Dystrophy.
abstract: This study investigated clinical and family characteristics associated with health-related quality of life in children with Duchenne muscular dystrophy. Families of 176 boys with Duchenne muscular dystrophy were identified and mailed questionnaires via the Canadian Neuromuscular Disease Registry. Multiple linear regressions analyses were used to examine the relationship between clinical and family characteristics and child-self and parent-proxy reported health-related quality of life. Greater fatigue and use of wheelchairs were consistently associated with worse health-related quality of life independent of other factors. Higher household income and parent having a postsecondary degree were associated with better health-related quality of life in some of the measures. A greater clinical focus on and efforts to reduce fatigue could lead to improvement of health-related quality of life in the Duchenne muscular dystrophy population. This study also sets the ground for longitudinal studies where changes in health-related quality of life can be monitored over time.
authors: Department of Pediatrics, University of Western Ontario, London, Ontario, Canada University of Western Ontario, Children's Health Research Institute, Lawson Health Research Institute, London, Ontario, Canada.
authors: Yi
authors: Y
authors: Wei
authors: Department of Pediatrics, University of Western Ontario, London, Ontario, Canada University of Western Ontario, Children's Health Research Institute, Lawson Health Research Institute, London, Ontario, Canada Epidemiology and Biostatistics, London, Ontario, Canada.
authors: Kathy Nixon
authors: KN
authors: Speechley
authors: Epidemiology and Biostatistics, London, Ontario, Canada.
authors: Guangyong
authors: G
authors: Zou
authors: Department of Pediatrics, University of Western Ontario, London, Ontario, Canada University of Western Ontario, Children's Health Research Institute, Lawson Health Research Institute, London, Ontario, Canada Epidemiology and Biostatistics, London, Ontario, Canada Clinical Neurological Sciences, London, Ontario, Canada Craig.campbell@lhsc.on.ca.
authors: Craig
authors: C
authors: Campbell
mesh_terms: D000328:Adult; D002170:Canada; D002648:Child; D003430:Cross-Sectional Studies; D005190:Family / Q000523:psychology; D005221:Fatigue / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology; D006801:Humans; D008297:Male; D020388:Muscular Dystrophy, Duchenne / Q000453:epidemiology* / Q000503:physiopathology / Q000523:psychology; D011788:Quality of Life; D012042:Registries; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D014910:Wheelchairs
keywords: Duchenne muscular dystrophy; fatigue; health-related quality of life; neuromuscular; registry