Factors Associated With Health-Related Quality of Life in Children With Duchenne Muscular Dystrophy

J Child Neurol. 2016 Jun;31(7):879-86. doi: 10.1177/0883073815627879. Epub 2016 Feb 10.


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.

Keywords: Duchenne muscular dystrophy; fatigue; health-related quality of life; neuromuscular; registry.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adult
  • Canada
  • Child
  • Cross-Sectional Studies
  • Family / psychology
  • Fatigue / epidemiology
  • Fatigue / physiopathology
  • Fatigue / psychology
  • Humans
  • Male
  • Muscular Dystrophy, Duchenne / epidemiology*
  • Muscular Dystrophy, Duchenne / physiopathology
  • Muscular Dystrophy, Duchenne / psychology
  • Quality of Life*
  • Registries
  • Socioeconomic Factors
  • Surveys and Questionnaires
  • Wheelchairs