Of the 600,000 American adults with congenital heart disease, fewer than 50,000 are believed to be treated by cardiologists trained to care for them.
That’s largely because advances in pediatric heart surgery and cardiac care have increased the lifespan of these patients, who either stop going to cardiologists when they reach adulthood or show up at cardiologists’ offices with conditions these doctors are not familiar with.
It’s because the care for these adults is poor or lacking that the Cincinnati Children’s Hospital Medical Center Heart Institute established the Adolescent and Adult Congenital Heart Disease Program.
We have established with the program a new model of care with four priorities:
- Ongoing, lifelong surveillance for patients with the most complex congenital heart defects to prevent complications
- Tailored education for each patient’s condition, including family planning and pregnancy, exercise, symptom identification, infection prevention and genetic counseling
- Transition planning for patients around age 18 to our program that will follow them throughout adulthood
- Delivery of ambulatory care within the walls of Cincinnati Children’s
The medical community is doing little to prevent the loss to care of these patients. This includes “bungling” the transition of care from adolescence to adulthood. Only children’s hospitals can handle all four of these priorities. Moreover this model of handling congenital heart disease can serve as a model for all chronic health conditions affecting adolescents.
In June, we will host the Course on Congenital Heart Disease, an international symposium co-sponsored by the American College of Cardiology Foundation. For three days, expert ACHD teams from North America and Europe will present interesting clinical cases with a particular focus on teaching and learning.
We’ve come far in our understanding of how genetics influence formation of the heart. Yet, we’ve done poorly figuring out how to fix what would seem to be a simple problem: providing care for patients when they need it from providers who understand the medical issues these patients face. Congenital heart disease programs, and this course, can go a long way toward achieving a solution.
Gary Webb, MD, Director, Adolescent and Adult Congenital Heart Disease Program