Top Things to Know: Physical Activity in Pediatric Cardiomyopathies
Updated: April 23, 2026
Prepared by Jennifer Conway MD; Jonathan B. Edelson MD MSCE
- Physical activity supports cardiovascular fitness, social development, and emotional well-being in all children. In those with cardiomyopathy, traditional restrictions have been based on fear of arrhythmia, sudden cardiac death (SCD), or disease progression. However, growing evidence shows these risks are often overstated, and inactivity itself contributes to cardiometabolic disease, obesity, and lower quality of life.
- Decades of overly cautious recommendations have resulted in widespread kinesiophobia (fear of physical activity) among children, parents, and providers. Many affected youth exhibit reduced cardiorespiratory fitness, sedentary behavior, and psychosocial challenges. Over-restriction promotes risk for secondary cardiovascular disease through hypertension, dyslipidemia, and obesity.
- Studies reveal that SCD in hypertrophic cardiomyopathy (HCM) is more likely to occur at rest than during exercise, and supervised exercise training in dilated cardiomyopathy (DCM)—even in those with advanced heart failure—is safe and beneficial. This paradigm shift supports replacing restriction with structured, individualized exercise prescriptions (for all children and adolescents with cardiomyopathy) to optimize physical and psychosocial outcomes.
- The FITT model—Frequency, Intensity, Time, and Type—guides clinicians in tailoring physical activity plans based on a child’s disease status and activity goals. This approach helps estimate cardiac workload and catecholamine stress, ensuring safe progression from daily movement to intentional exercise or sport participation. Unsupervised or medically supervised programs can be aligned with patient capacity and preferences.
- The traditional “no-exercise” approach has shifted to a risk-stratified inclusion approach. Comprehensive assessment (family history, MRI, ECG, CPET) identifies those at higher SCD risk. Most children can engage safely in light-to-moderate physical activity. For all pediatric HCM patients, an emergency action plan—including AED access and trained bystanders—is essential during organized activity.
- In children and adolescents with DCM, regular physical activity improves exercise capacity, ventricular function, and quality of life those awaiting a heart transplant benefit from “prehabilitation,” which enhances conditioning and post-transplant recovery. While arrhythmia-prone genetic variants (e.g., LMNA/C, DSP, FLNC) warrant closer monitoring, most pediatric DCM patients derive far greater benefit than risk from exercise.
- Restrictive cardiomyopathy (RCM) is rare, often associated with diastolic dysfunction and pulmonary hypertension; evidence for exercise safety is limited, requiring case-by-case decisions. In arrhythmogenic cardiomyopathy, genotype matters—vigorous endurance activity increases SCD risk in PKP2-mediated disease but may be acceptable at moderate levels for other genotypes under shared decision-making.
- Historical avoidance of exercise among ICD recipients has fueled anxiety and inactivity. Data from the multinational ICD Sports Registry show low rates of device complications or inappropriate shocks during sport, with no deaths or cardiac arrests reported. Proper device programming (high-rate cutoff, long detection intervals) and individualized counseling make physical activity both safe and empowering.
- Effective shared decision making engages clinicians, parents, and age-appropriate pediatric patients in an open discussion of risks, benefits, and personal values. Using frameworks such as SHARE (Seek, Help, Assess, Reach, Evaluate), providers can navigate differing parental and patient preferences and reduce decisional regret. Shared decision making supports autonomy and fosters sustained engagement in healthy activity.
- Cardiomyopathy phenotypes and risk profiles evolve through childhood and adolescence, necessitating at least annual reassessment with history, imaging, and CPET. Providers are encouraged to review physical activity participation, revisit shared decision-making decisions and adjust clinical guidance as children mature or disease changes. Future research that clarifies dose–response relationships between physical activity and outcomes, especially regarding cardiometabolic and psychological benefits, is warranted.
Citation
Edelson JB, Baker-Smith CM, Cifra B, Cousino M, Day SM, Drezner JA, Dubin AM, Gates C, White DA, Conway J; on behalf of the Pediatric Heart Failure and Transplantation Committee of the Council on Lifelong Congenital Heart Disease and Heart Health in the Young; Council on Clinical Cardiology; Council on Lifestyle and Cardiometabolic Health; and Council on Cardiovascular and Stroke Nursing. Physical activity in pediatric cardiomyopathies: moving for health: a scientific statement from the American Heart Association. Circulation. Published online April 23, 2026. doi: 10.1161/CIR.0000000000001431