Funding outcome

Hypertrophic cardiomyopathy (HCM) is a disease of the heart muscle that causes it to be abnormally thick. This thick muscle can make it hard in for the heart to pump blood, which can lead to symptoms like chest pain, and in some cases abnormal heart rhythms. Children and adolescents with HCM are usually counseled to avoid competitive sports and intense physical activity because of the stress on the abnormal heart during physical activity and the risk of serious heart rhythms. This recommendation has resulted in patients avoiding activity altogether placing them at risk of coronary heart disease (such as heart attacks) in adulthood. Currently, there are no agreed upon exercise interventions for youth with HCM, so our goal is to develop an exercise intervention that can be done at home and has been tested for safety and acceptability. To achieve our goal, we will complete the following steps. First, we will gather a group of experts (n=8) as well as patient representatives to draft a home-based exercise intervention. Second, we will survey healthcare professionals who treat patients with HCM to achieve agreement on the intervention. Third, we will test the home-based exercise intervention by having children and adolescents with HCM complete the intervention in a supervised setting with an expert in exercise medicine so we can monitor them for safety, including symptoms, heart rate, oxygen levels, and heart rhythm. Last, we will interview youth and their families to explore their experiences and recommendations regarding the exercise intervention, including feedback to improve the intervention and participation while at home. All of the information and experience we gain from these steps will help our team to develop a large-scale study in the future, which will test the effects of our home-based exercise intervention on participation in physical activity, weight management and exercise capacity in children and adolescents with HCM.