Evaluating a Home-Based Neuro-Cardiac Rehabilitation Program to Improve Quality of Life for Children, Teens, and Young Adults with Complex Congenital Heart Disease

What this Trial Is About

Researchers are evaluating a home-based neuro-cardiac rehabilitation program for children, teens, and young adults aged 8 to 25 years with rare and complex congenital heart disease CHD. The study aims to address common long-term challenges in this population, including neurodevelopmental difficulties, mental health issues, and reduced exercise capacity, which negatively impact quality of life. This randomized controlled trial compares the new integrative program combining physical and psychological rehabilitation to the standard cardiology care. The intervention group will participate in a 12-week program that includes two weekly sessions of adapted physical exerciseone in person at home and one via videoconferencefocusing on bicycle training and other activities. Additionally, they will engage in computerized cognitive training sessions and telehealth psycho-education for emotional regulation and executive functioning, involving both patients and their parents. The control group will receive standard cardiology care without additional rehabilitation activities. Participants will be assessed over 12 months for changes in health-related quality of life, cognitive and mental health outcomes, and physical and cardiovascular measures. Assessments include standardized questionnaires, neuropsychological tests, and cardiopulmonary exercise tests. Parents will be actively involved and receive personalized feedback and educational resources. The study will measure the effectiveness of this comprehensive program to potentially improve care for children with rare CHD.

Neuro-cardiac Rehabilitation in Youth With Congenital Heart Disease (QUALINEUROREHAB)