To address the medical, educational and psychosocial needs of young adults with congenital heart disease (CHD) in order to prepare them for eventual, informed, timely and uninterrupted transition and transfer to adult congenital heart disease care.
In this program, you will learn about:
- Your specific congenital heart disease type
- Your surgical and/or cardiac catheterization history
- Exercise and diet considerations
- Lifestyle, travel and career considerations
- Coping with life with CHD
- Emergency medical situations
- Your future with CHD
You also have the opportunity to:
- Meet and learn from other teens who have CHD
- Help to create programs for individuals with CHD
- Serve as a mentor to others with CHD
- Serve as a junior camp counselor at Camp Pump it Up to care for younger campers with CHD
Our program focuses on training adolescents with CHD to be responsible adults with CHD. A trained nurse and social worker will conduct a needs assessment and create an individualized learning plan specific to the adolescent’s needs and knowledge gaps.
Serial educational sessions and assessments will be conducted to ensure appropriate knowledge and skill base prior to transferring to adult care.
Serial assessments focus on promoting independence in the following areas:
- Education: CHD knowledge for lifelong care
- Skill building: Tools needed to become a successful adult with a CHD
- Enhancing connections: Providing an environment to foster social networks for patients and advocates with CHD
- Creating a portfolio: Including a medical summary and lists of financial, psychosocial and adult CHD resources
- Community building: Building a community of young adults with CHD
How to Get Involved
- Patient eligibility is determined by their pediatric cardiologist and the transition team staff.
- Families are contacted by the transition team to alert them of an upcoming transition team visit (completed along with regular cardiology visits).
- Patients who are currently ineligible may become eligible in the future as the program expands.