Routine physical activity has been increasingly regarded as important for youth with cardiomyopathies or congenital heart disease with heart failure, including Fontan circulatory failure. This ACTION publication shows results of a survey assessing real-world practice regarding exercise recommendations: “Significant Variation in Exercise Recommendations for Youth With Cardiomyopathies or Fontan Circulation: An Advanced Cardiac Therapies Improving Outcomes Network Learning Survey.”
The survey respondents included 38 pediatric cardiomyopathy and heart failure providers from 24 centers in North America. Notably, 95% reported that they provide regular physical activity counseling to patients. However, practice variation in exercise recommendations was observed.
Survey Key Takeaways:
- Generally, recommendations were more uniform in extreme cardiac disease severity compared to moderate cases.
- Exercise restrictions appeared to be less common in patients with Fontan circulation compared to patients with hypertrophic cardiomyopathy or dilated cardiomyopathy. This is likely due to a lack of data regarding the safety of unsupervised exercise in these populations.
- We need to establish routine, objective measures for safe, beneficial physical activity in youth with severe heart disease. Collaboration and shared decision-making between pediatric heart failure specialists, young patients, and their families will help us improve and standardize care.
Check out ACTION’s open-access research letter, published in Circulation: Heart Failure, an American Heart Association Journal, for clinical vignettes of varying cardiac disease severity and even more insights.
ACTION researchers include:
- Michael Khoury, Stollery Children’s Hospital
- Samuel Wittekind, Cincinnati Children’s Hospital Medical Center
- Ashwin K. Lal, Primary Children’s Hospital
- Jennifer Conway, Stollery Children’s Hospital
- Neha Bansal, Children’s Hospital at Montefiore
- Angela Lorts, Cincinnati Children’s Hospital Medical Center
- David Rosenthal, Lucile Packard Children’s Hospital
- Danielle Burstein, Children’s Hospital of Philadelphia
Khoury M, Wittekind S, Lal AK, Conway J, Bansal N, Lorts A, Rosenthal D, Burstein D. Significant Variation in Exercise Recommendations for Youth With Cardiomyopathies or Fontan Circulation: An Advanced Cardiac Therapies Improving Outcomes Network Learning Survey. Circ Heart Fail. 2021 Sep;14(9):e008738. doi: 10.1161/CIRCHEARTFAILURE.121.008738. Epub 2021 Sep 14. PMID: 34517722.