Quality of life of patients with Duchenne muscular dystrophy: from adolescence to young men

Abstract

Purpose: 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.

Keywords:

• Duchenne muscular dystrophy
• quality of life
• short form 36
• World Health Organization

Acknowledgments

We are most grateful to the study participants for their contribution to this study.

Disclosure statement

All authors report no declarations of interest.

Funding information

This work was supported by grants from the National Science Council (NSC) (project NSC-89-2614-B-035-005-M47, NSC90-2614-B-037-004-M47, NSC91-2614-B-037-009-M47).