Abstract 14231: Balancing Exercise Risk With Cardiovascular Health in Pediatric Hypertrophic Cardiomyopathy

Abstract

Introduction: Physical activity is vital to long-term cardiovascular health. However, patients with hypertrophic cardiomyopathy (HCM) are often advised to avoid strenuous physical activity due to the risk of sudden cardiac death. Objective: Given activity restrictions and recommendations for patients with HCM, our objective was to explore children and parents’ perceptions of a heart healthy lifestyle. Methods: Children with HCM and their parents were purposefully recruited at two Canadian sites for participation in a photovoice project. Participants (children and parents) were given a camera and asked to take pictures of everyday heart healthy or unhealthy choices. Photos were discussed during one-on-one qualitative interviews with children and parents separately to understand the photos meaning and significance. Inductive descriptive thematic analysis was used. Results: Thirteen child/parent pairs participated. Children (median 15.9 yrs old (range: 13.6-17.7), median BMI 28.5kg/m 2 (range: 17.8-36.7)) were mostly male (62%). Parents were all female. Most children were activity restricted (n=12). Participants took photos to represent being physically active, the majority being non-competitive activities. Specifically, they emphasized the importance of regular activity to support physical, emotional and heart health. While physical activity was identified as a healthy choice, participants learned from the cardiologist that certain activities were too risky to participate in. Despite these restrictions, children engaged in other types of activity and were supported by their parents and cardiologist. Two categories (self-limiting and finding the right sport) explained strategies children used to engage in physical activity in heart healthy ways. One child stated, “I think it got easier [over the years] because now I know my limits, and I know what I can and can’t do”. Conclusions: Children with HCM and their parents want to be physically active and sought guidance from the cardiologist. These data demonstrated how children with HCM used self-awareness to make heart healthy decisions about physical activity. This study supports the need for patient-centered, individualized physical activity counselling for patients with HCM.