Pathway Background and Objectives
Congenital heart disease (CHD) is the most common birth defect, accounting for ~1% of all live births. 20,000-40,000 children with CHD graduate to adulthood each year. There are over 1.4 million adults with congenital heart disease living in the USA. Adults with CHD have been shown to have better outcomes when followed in a specialized adult congenital heart disease (ACHD) center. CT Children’s became the first accredited ACHD program in the state in 2018.
It is believed that the majority of adult patients with congenital heart disease are not receiving specialized ACHD care. They often believe they were fully repaired in childhood and are not aware of the late complications. Adult cardiologists and internal medicine providers are often unaware of the late sequelae as well. There is a general lack of awareness that our CTACH program exists. The specific objectives of our program are to:
- Raise awareness that specialized care is needed for patients with ACHD
- Make access to specialized care as easy as possible