Children with Cardiomyopathy have Active Lifestyles Despite Reporting Disease-Specific Barriers to Physical Activity: A Mixed-Methods Study

Objectives: This exploratory mixed-methods study explored the barriers to physical activity, daily physical activity and submaximal exercise capacity among children with and at risk for cardiomyopathy and children with atrial septal defects.Methods: The study followed a convergent parallel mixed methodology design. Semi-structured interviews explored physical activity barriers. Seven-day accelerometry assessed moderate-to-vigorous physical activity, and an intermittent cardiopulmonary exercise test measured submaximal exercise capacity.Results: Twenty children, including 5 with cardiomyopathy (n=2 females, 14.2 ± 2.7 years old), 7 who were genotype-positive phenotype-negative for cardiomyopathy (n=5 females, 10.6 ± 3.3 years old) and 8 with atrial septal defects (n=4 females, 9.4 ± 3.8 years old) were recruited. Children with cardiomyopathy reported disease-specific physical activity barriers, while children who were genotype-positive phenotype-negative perceived barriers related to lack of time, parent support or activity motivation. The average daily moderate-to-vigorous physical activity was less than the recommended 60-minutes/day (n=20, mean 48.1 ± 18.0 minutes). Children with cardiomyopathy participated a median of 141.2 [interquartile range (IQR): 98.8) minutes of light-intensity physical activity and a median of 55.6 (IQR: 34.6) minutes of moderate-to-vigorous physical activity. The average submaximal exercise capacity was low (n=16, 25.2 ± 5.7 mL/kg/min). Estimated submaximal exercise capacity, including metabolic equivalent (4.5 ± 3.1 METs), respiratory exchange ratio (median = 1.0, IQR: 0.09) and ratings of perceived exertion (median = 7, IQR: 5) at peak exercise suggest that children with cardiomyopathy appear to have the exercise capacity to participate in low-to-moderate intensity activities.Conclusions: These novel data suggest that a diagnosis of cardiomyopathy may not preclude children from participating in a healthy, active lifestyle. However, they perceive disease-specific physical activity barriers and may require support to optimize their level of participation for optimal health.