Heart health in children with hypertrophic cardiomyopathy
Hypertrophic cardiomyopathy (HCM) is a disease of the heart muscle that causes the heart to become thicker and this thickness places children at risk of heart rhythm problems, heart failure and sudden death (SD). To decrease the risk of SD, health care providers generally counsel that the patient should stop all intense physical activity. While this may decrease the risk of SD, it is unclear what the long-term impact of reduced physical activity is on cardiovascular (CV) health in children with HCM. CV disease is a disease of the heart and blood vessels and is the cause of heart attacks in adults. There are many risk factors for the development of CV disease including genetics, medical conditions and lifestyle choices. While some studies in adults suggest that patients with HCM are at higher risk of poor CV health, this has not yet been assessed in children. There is a lot of information that suggests the development of CV disease starts early in life and therefore by promoting heart healthy lifestyles in children, it is possible that these children will becomes healthier adults. The goal of this project is to assess risk factors for CV disease in a population of children with HCM across pediatric cardiac programs in Canada. This assessment will be to look at factors we can measure ( e.g., weight, cholesterol levels) and patients' and families' perceptions of what it means to be heart healthy. We hope to identify risk factors for heart disease and poor 'heart healthy' lifestyles choices that are present in children with HCM in order to allow us to develop strategies to decrease these risk factors in these patients. With a better understanding of the families' perceptions of heart healthy behaviours, we can develop educational tools and resources for CV health promotion in patients with HCM.