Article

This study investigated quality of life (QOL) in adolescent and young
men with Duchenne muscular dystrophy (DMD). METHODS: Health-related QOL and
global QOL were assessed with the Short Form 36 (SF-36) and World Health
Organization Quality of Life-BREF (WHOQOL-BREF). Associations between functional
status and QOL were assessed. RESULTS: All domains of the SF-36 were below Taiwan
norms (effect size: -14.2 to -0.5), especially Physical Function, Role Physical,
and Social Function. Three of the four domains of the WHOQOL-BREF were below
Taiwan norms (effect size: -2.0 to -0.7). The Physical Function of the SF-36 was
moderately correlated with functional status (mobility, basic activities of daily
living, and arm function). The Social Function of the SF-36 and Social
Relationships of the WHOQOL-BREF were also moderately correlated with functional
status (impairment, basic activities of daily living, and arm function).
CONCLUSION: The adolescent and young men with DMD had poor health-related and
global QOL. Poor QOL was related to both physical condition and social health. We
suggest that rehabilitation programs focus on using assistive devices to
facilitate arm function and encouraging participation in social activities to
improve the QOL of patients with DMD. Implications for rehabilitation Duchenne
muscular dystrophy (DMD) is a progressive muscle weakness disease that not only
impacts physical health but also leads to poor quality of life in many domains. A
valuable rehabilitation goal for patients with DMD is to encourage participation
in social activities. Medical care and educational programs should plan a formal
transition processes for patients with DMD from pediatric to adult care to
maximum their quality of life. Arm function is associated with many domains of
global quality of life, so a key element in improving quality of life may be to
improve arm function.

Langue : ANGLAIS