Physical Activity and Quality of Life Among Caregivers of Children with Duchenne Muscular Dystrophy

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.

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Publication Details

Journal
Healthcare
Published
2026-05-21
DOI
https://doi.org/10.3390/healthcare14101425
Primary Topic
Muscle Physiology and Disorders
Type
article
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0.00
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article

Physical Activity and Quality of Life Among Caregivers of Children with Duchenne Muscular Dystrophy

İrem Akgün, Peren Perk, Serkan Usgu, Sedat Yiğit et al.
Healthcare
Muscle Physiology and Disorders
article

Physical Activity and Quality of Life Among Caregivers of Children with Duchenne Muscular Dystrophy

İrem Akgün, Peren Perk, Serkan Usgu, Sedat Yiğit, Murat Ali Çınar, Kübra Coşkun
article en

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.

HealthcareVol. 14(10)
Hasan Kalyoncu University (TR), Gaziantep University (TR), University of Health Sciences Antigua (AG)
No poverty
Openalex Percentile: Top 9%
Muscle Physiology and Disorders
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