Duchenne Muscular Dystrophy (DMD) is a neuromuscular disease characterized not only by progressive muscle weakness but also by cognitive, behavioral, and psychosocial impairments. Motor losses that occur during disease progression reduce physical activity levels in children and increase the risk of developing a sedentary lifestyle. Interventions aimed at maintaining or promoting physical activity in children with DMD are important for preventing secondary complications associated with disuse and physical inactivity. To develop effective interventions, there is a need for comprehensive knowledge regarding the factors that influence physical activity levels.
Current literature indicates that, in typically developing children, physical activity levels are influenced not only by motor factors but also by cognitive status, sleep, behavioral characteristics, and family-related environmental and psychosocial factors. However, information regarding these multidimensional factors affecting physical activity levels in children with DMD remains limited.
This study aims to identify the body functions, activity, participation, environmental, and personal factors affecting physical activity levels in children with DMD based on the framework of the International Classification of Functioning, Disability and Health - Children and Youth Version (ICF-CY). Accordingly, the effects of posture, functional capacity, ambulatory status, balance, other musculoskeletal parameters, cognitive status, sleep habits and sleep quality, fear of falling, and behavioral characteristics, as well as family-related factors including parenting style, perceptions of physical activity, stress level, attitudes and perceptions toward daily life events, and disease impact, will be evaluated. The impact of these variables on physical activity levels and the magnitude of this effect will be examined within the ICF-CY framework.
Being a parent or primary caregiver of a child diagnosed with Duchenne Muscular Dystrophy (DMD),
Volunteering to participate in the study.
Having caregiving responsibilities for another child or adult with a disability, other than the child with DMD,
Experiencing difficulties in understanding or responding to the questionnaires administered by the physiotherapist.
Having a confirmed diagnosis of Duchenne Muscular Dystrophy (DMD),
Being between 6 and 14 years of age,
The study population will consist of children diagnosed with Duchenne Muscular Dystrophy (DMD) and their parents or primary caregivers. Eligible children will be males aged 6 to 14 years with a confirmed diagnosis of DMD who are ambulatory, classified within the first four levels of the Brooke Lower Extremity Functional Classification, and able to follow assessment instructions. Parents or primary caregivers of these children who voluntarily agree to participate will also be included. Participants will be recruited from pediatric neuromuscular rehabilitation and physiotherapy settings.
Case-only
Prospective
Not listed
Physical Activity Questionnaire for Children-PAQ-C
The physical activity level of children with DMD will be assessed using the Physical Activity Questionnaire for Children (PAQ-C).
The New York Posture Rating Chart
The New York Posture Rating Chart will be used to assess posture in children with DMD.
Six Minute Walk Test (6MWT)
The 6MWT will be used to evaluate functional capacity in children with DMD.
Pediatric Quality of Life Inventory - Multidimensional Fatigue Scale (PedsQL-MFS)
Fatigue in children with DMD will be assessed using the PedsQL-MFS.
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Hacettepe University
Lead sponsor
Ankara Medipol University
Sponsor institution
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