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.
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Physical Activity Questionnaire for Children-PAQ-C
Timeframe: At baseline (single assessment at enrollment)
The New York Posture Rating Chart
Timeframe: At baseline (single assessment at enrollment)
Six Minute Walk Test (6MWT)
Timeframe: At baseline (single assessment at enrollment)
Pediatric Quality of Life Inventory - Multidimensional Fatigue Scale (PedsQL-MFS)
Timeframe: At baseline (single assessment at enrollment)
Duchenne Muscular Dystrophy Gait Assessment Scale (DMD-GAS)
Timeframe: At baseline (single assessment at enrollment)
North Star Ambulatory Assessment (NSAA)
Timeframe: At baseline (single assessment at enrollment)
Four Square Step Test (FSST)
Timeframe: At baseline (single assessment at enrollment)
Lower Extremity Muscle Strength Assessment
Serenay Zorlu Develik, PhD Candidate
Timeframe: At baseline (single assessment at enrollment)
Assessment of Lower Extremity Joint Range of Motion
Timeframe: At baseline (single assessment at enrollment)
Muscle Shortness Assessment
Timeframe: At baseline (single assessment at enrollment)
Modified Mini-Mental State Examination (MMSE)
Timeframe: At baseline (single assessment at enrollment)
Trail Making Test
Timeframe: At baseline (single assessment at enrollment)
Children's Sleep Habits Questionnaire (CSHQ) - Short Form
Timeframe: At baseline (single assessment at enrollment)
Pediatric Sleep Questionnaire - Sleep-Related Breathing Disorder Subscale (PSQ-SRBD)
Timeframe: At baseline (single assessment at enrollment)
ICF-Based Fear of Falling Form for Pediatric Neuromuscular Diseases (Ped-FOF)
Timeframe: At baseline (single assessment at enrollment)
Strengths and Difficulties Questionnaire (SDQ)
Timeframe: At baseline (single assessment at enrollment)
Pediatric Motivation Scale (PMS)
Timeframe: At baseline (single assessment at enrollment)
Pittsburgh Sleep Quality Index (PSQI)
Timeframe: At baseline (single assessment at enrollment)
Parenting Scale
Timeframe: At baseline (single assessment at enrollment)
Perceived Barriers to Physical Activity Scale
Timeframe: At baseline (single assessment at enrollment)
Perceived Stress Scale (PSS)
Timeframe: At baseline (single assessment at enrollment)
Cognitive Control and Flexibility Scale (CCFS)
Timeframe: At baseline (single assessment at enrollment)
Impact on Family Scale (IPFAM)
Timeframe: At baseline (single assessment at enrollment)