The heart of the matter
Each November, cardiologists flock from around the country to the American Heart Association annual meeting. For good reason: Heart and blood vessel diseases remain the nation’s number one killer.
I don’t know how many cardiologists are here at the Orlando Convention Center, but it’s clear that only a small percentage of them take care of children. That’s a problem, particularly for people who were born with congenital heart disease, many who are now living well into adulthood due in part to the quality of pediatric cardiac care.
The care of adults with congenital heart disease in the United States has been and remains poor. Of approximately 600,000 American adults with complex CHD, fewer than 50,000 are known to be followed by a cardiologist specially trained to care for adult patients and the issues they experience.
There have been two major related problems: Patients of all ages are lost to follow-up by pediatric cardiologists, and there has been, and is, a shortage of adult congenital heart disease care equal to the quality and scope of pediatric cardiac care.
This is why Cincinnati Children’s Hospital Medical Center’s Heart Institute is establishing a CHD clinic and recruited perhaps the leading congenital heart disease expert in the nation, Gary Webb, MD, to run it.
The Heart Institute and Dr. Webb plan a new model of care to address these problems: It is establishing a CHD clinic to which all patients would transfer at the age of 18. The clinic will collaborate with pediatric cardiologists during patients’ adolescence to help prepare them and their families to accept the responsibilities to their own health maintenance and to those of adult life.
It’s important that the Heart Institute will do this within the walls of Cincinnati Children’s, rather than expect an “adult” hospital or group to meet the needs of these patients. This is what we’ve done in the past, and it has failed. Most important, the adult CHD clinic can serve as a model for a variety of chronic medical conditions of young people, many of whom are either lost to care or receive worse care once they transfer to practitioners who treat adults.
The practitioners here in Orlando will take home valuable information. But they won’t learn much about kids or about adults who had heart disease their entire lives. Let’s hope that changes in future years.