New AHA Statement: Physical Activity May Be Safer Than Thought for Children with Heart Conditions

Physical activity in children and teenagers with cardiomyopathy or implantable cardioverter-defibrillators (ICDs) may be safer than previous research suggested, according to a new scientific statement from the American Heart Association, published today in the Association’s flagship peer-reviewed journal Circulation.

While physical activity and exercise are essential for childhood development and long-term health, they have been traditionally discouraged among children and adolescents with cardiomyopathies and ICDs due to concerns that they could worsen heart function or lead to sudden cardiac death.

“While safety is always paramount, halting all physical activity among children with cardiomyopathy or ICDs has at times led to unintended consequences. The latest research indicates that restricting children’s movement can negatively affect their heart health, physical fitness levels, mental well-being and social development, and quality of life,” said Jonathan B. Edelson, M.D., M.S.C.E., chair of the scientific statement writing group, an associate professor of pediatrics and medical director of the sports cardiology program and heart transplant and ventricular assist device programs in the division of cardiology at Children’s Hospital of Philadelphia.

The statement emphasizes a personalized approach: tailored risk assessments based on diagnosis, risk profile, genetic profile and clinical evaluations are critical to better guide decisions about prescribing physical activity for children with different types of cardiomyopathies. Various diagnostic screening tools, such as echocardiograms, cardiac imaging and exercise stress tests, can be used to assess symptoms at rest and with activity. Genetic testing and family screening can also be helpful to assess individual risk.

Shared decision-making among clinicians, families and patients is crucial. Clinicians, families and (when developmentally appropriate) children or adolescents with cardiomyopathy and/or ICDs can work together to balance a patient’s risk, patient- and family-tailored goals and values. It is important for clinicians to disclose when risk evidence is based on adult data.

Close follow-up and reassessment are also important. Ongoing monitoring is needed to track potential shifts in risk, assess if symptoms progress and evaluate if heart function improves or deteriorates. The recommendations for safe physical activity must evolve as the child grows, activities change and the disease progresses.

The new scientific statement aims to shift from a one-size-fits-all approach to physical activity limitations to considering ways for youth with heart conditions or an ICD to safely participate in physical activities - from low-intensity daily activities to high-intensity training and sports in select cases - after a detailed individualized risk assessment.

Light-to-moderate intensity exercise (such as walking, light cycling or swimming) may be appropriate to maintain physical fitness, social development and quality of life, with regular monitoring of their condition. Structured physical activity, such as fitness classes, strength training, running, biking, hiking or organized sports programs, may be reasonable for some children and adolescents with heart conditions. For some carefully selected pediatric patients with certain cardiomyopathies, participation in physical activity including competitive sports may be reasonable after expert assessment and shared decision-making discussion about the risks and benefits. Emergency action plans, including AED (automated external defibrillator) access and bystanders trained in CPR, are essential during organized sports.

“Children with cardiomyopathy should not automatically be sidelined from participating in physical activity, including recreational or competitive sports,” Edelson said. “Most children should be physically active - with individualized evaluation, monitoring and planning. Physical activity is important for their long-term health, physical and social development.”

The statement notes more research is needed about childhood cardiomyopathies because most of the findings are based on observational studies in adults; therefore, findings should be applied cautiously to a pediatric population. Outstanding questions remain, such as how moderate or vigorous exercise may affect long-term progression and how risk varies across different types of cardiomyopathies.

This scientific statement was prepared by the volunteer writing group on behalf of the American Heart Association’s Pediatric Heart Failure and Transplantation Committee. Additional resources on the statement can be found here.