Quality of Life and Health-Related Quality of Life in Children with Duchenne Muscular Dystrophy

Quality of life studies in Duchenne Muscular Dystrophy are scarce. This study explores the relationship between the broad concept of quality of life and the more focused concept of health-related quality of life and examines the relationships between patient and family characteristics and health-related quality of life. Participants were recruited from the Canadian Neuromuscular Disease Registry, 98 parents and 85 children completed the Quality of My Life and Pediatric Quality of Life Inventory questionnaires. Simple regression was used to examine the relationship between quality of life and health-related quality of life. Multivariable linear regressions were used to determine child and family characteristics associated with health-related quality of life outcomes. Higher levels of subjective fatigue and use of wheelchair emerged as factors most consistently associated with lower levels health-related quality of life. Interventions to reduce fatigue could lead to improvement of health-related quality of life for children with Duchenne Muscular Dystrophy