Background: Over the last few decades, care of Fontan patients has changed dramatically. Regular physical activity, previously discouraged in these patients, has now been shown to improve cardiac output, exercise capacity, and quality of life. As more structured exercise programs are being implemented in those with Fontan circulation, it is unclear what type and level of physical activity should be targeted in these patients for optimal benefit. In addition, the barriers to regular physical activity have not been fully elucidated. We sought to determine what Fontan patients are currently doing for activity as well as barriers to activity to facilitate future initiatives for improvement. 

Methods: Fontan patients and parents were surveyed regarding physical activity participation, their perceived importance of regular physical activity, barriers to physical activity, and recommendations from their cardiologist regarding physical activity. This survey was disseminated online to parents and patients via patient group social media channels. 

Results: Overall, 168 individuals (129 parents, 39 patients) completed the survey. Median patient age at survey was 10 years (interquartile range 7-18 years). Across all age ranges, 75% of respondents participated in gym class but only 35% participated fully. Only 21% of respondents spend more than 5 hours per week engaged in low exertion activity, and only 7% spend more than 5 hours per week engaged in high exertion activity. Interestingly, in all domains questioned, those less than 13 years of age have higher participation rates than those 13 or older. About 80% of parents reported belief that physical activity is very or extremely important to their child’s health and quality of life but less than half (42%) say their child shares those feelings. When asked about activity recommendation, 43% of respondents reported that their cardiologist does not discuss specific activity or exercise recommendations with them. 

Conclusions: Despite the evidence over the last two decades demonstrating the benefit of exercise for Fontan patients, only a small minority of patients’ report engaging in significant amounts of physical activity. Additionally, a significant proportion of cardiologists do not stress the value of regular exercise. As more information becomes available regarding the benefits of regular physical activity and what the ideal activities are, more education to both families and providers caring for Fontan patients is necessary.