Related Experiment Video
Updated: May 28, 2026
Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
Published on: January 12, 2019
Physical Activity and Quality of Life Among Caregivers of Children with Duchenne Muscular Dystrophy
Sedat Yiğit1, İrem Akgün1, Kübra Coşkun2
1Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Gaziantep University, 27310 Gaziantep, Türkiye.
Insights
Caregivers of children with Duchenne muscular dystrophy (DMD) report lower quality of life, especially in mental health and social functioning, despite similar physical activity levels compared to other caregivers. Interventions should focus on psychosocial well-being and pain management.
Area of Science:
- Neurology
- Public Health
- Caregiver Studies
Background:
- Duchenne muscular dystrophy (DMD) presents significant care demands.
- Caregiver physical activity (PA) and health-related quality of life (HRQoL) are understudied.
- This research addresses the gap in understanding caregiver well-being in DMD.
Purpose of the Study:
- To compare PA levels and HRQoL between caregivers of children with DMD and controls.
- To identify specific HRQoL domains affected in DMD caregivers.
- To inform targeted support strategies for this population.
Main Methods:
- Cross-sectional observational study.
- 44 participants: 22 DMD caregivers and 22 controls.
- Assessed HRQoL using SF-36 and PA using IPAQ-SF.
Main Results:
- No significant difference in PA levels between DMD caregivers and controls.
- DMD caregivers reported significantly poorer HRQoL in vitality, social functioning, physical role limitations, pain, and mental health.
- The most pronounced difference was in emotional role limitations.
Conclusions:
- Caregivers of children with DMD experience significant HRQoL deficits, particularly psychosocial and pain-related.
- Reduced HRQoL is not solely explained by PA levels.
- Multidisciplinary interventions are needed to address psychological health, pain, and social well-being in DMD caregivers.
Abstract:
Background/Objectives: Duchenne muscular dystrophy (DMD) is a rare progressive neuromuscular disorder associated with increasing care demands. Despite the critical role of caregivers, their physical activity (PA) levels and health-related quality of life (HRQoL) have not been sufficiently investigated. This study aimed to compare PA levels and HRQoL between caregivers of children with DMD and caregivers of typically developing children. Methods: This cross-sectional observational study included 44 individuals: caregivers of children with DMD (n = 22) and caregivers of typically developing children (n = 22). The 36-Item Short-Form Health Survey (SF-36) was used for assessing HRQoL and the International Physical Activity Questionnaire-Short Form (IPAQ-SF) for determining PA levels. Results: IPAQ-SF-derived metabolic equivalent of task (MET) values and PA levels were similar between the groups (DMD caregivers: 1744.63 ± 1163.22, controls: 1945.09 ± 1042.12; p > 0.05). Caregivers of children with DMD demonstrated significantly poorer scores in several SF-36 domains, including vitality, social functioning, role limitations due to physical problems, bodily pain, and mental health (p < 0.05), with the largest difference observed in role limitations due to emotional problems (DMD caregivers: 45.27 ± 28.33, controls: 84.83 ± 24.63; p < 0.05). Physical functioning and general health perception scores were comparable (p > 0.05). Conclusions: Caregivers of children with DMD experience substantial impairments in multiple HRQoL domains, particularly those related to psychosocial well-being and pain, despite comparable PA levels and physical functioning. These findings suggest that reduced HRQoL is not directly explained by PA alone and highlight the need for multidisciplinary interventions targeting psychological health, pain management, and social well-being.
