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Participation and quality of life in children with Duchenne muscular dystrophy using the International Classification of Functioning, Disability, and Health

DOI: 10.1186/1477-7525-10-43

Keywords: Duchenne muscular dystrophy, ICF, Participation, Quality of life

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Abstract:

Fifty boys with DMD and 25 unaffected age-matched boys completed two self-report measures: the Children’s Assessment of Participation and Enjoyment and the Pediatric Quality of Life InventoryTM 4.0. We investigated differences between the two groups with regard to participation in life activities and perceived quality of life (QoL). Additionally, we compared participation in activities and QoL in both cohorts of younger and older boys.Participation in physical activities was significantly lower in boys with DMD than unaffected boys. Perceived QoL was markedly diminished in children with DMD relative to unaffected controls, except in the emotional domain. The amount of time boys engage in an activity, as well as participation in social activities, declined for our older boys with DMD but no changes were observed for our older unaffected boys. For both groups, QoL remained constant over time.The ICF-CY provides a conceptual framework and specific terminology that facilitates investigation of the consequences of impairment in children and youth. Our study is one of the first to explore participation in a cohort of boys with DMD. It was not surprising that activities of choice for boys with DMD were less physical in nature than unaffected boys their age, but the consequences of less social engagement as the boys with DMD age is of great concern. Results from our study underscore the need to further evaluate activities that children elect to participate in, with special emphasis on facilitators and barriers to participation and how participation changes throughout the course of a disease.Duchenne muscular dystrophy (DMD), the most common form of muscular dystrophy, is a genetically-linked disease of male children which affects one in 3,300 boys [1]. The muscle damage and weakness which occurs with this disease leads to a progressive decline in the boy’s ability to perform everyday tasks, such as climbing stairs and walking short distances [2-4]. Disruption to the lives o

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