Paula Miller
Senior Education Manager, Adult Congenital Heart Association (ACHA)
According to the American College of Cardiology (ACC)/American Heart Association (AHA) 2018 Guidelines, anyone who has been told they have congenital heart disease (CHD) should be seen in a specialized adult congenital heart disease (ACHD) clinic at least once.
Furthermore, receiving care from an ACHD program is more crucial if you have complex CHD. For years, the challenge had been finding that recommended care. Today, this knowledge lies in the Adult Congenital Heart Association’s online ACHD Clinic Directory.
As a congenital heart adult patient, I struggled for years trying to find a cardiologist who understood the way my heart was made and how it functioned. I was told by general cardiologists that they would do the best they could, but they had limited experience caring for adults with CHD and they didn’t know any cardiologists who had that background. This information drove me to learn more.
In 1999, I joined an online chat group of people with CHD. Through conversations with patients like myself who happened to be members of Adult Congenital Heart Association (ACHA), I learned that at that time, there were just a few ACHD cardiologists around the country. Finding the right care changed the trajectory of my health.
Finding the right care
As a relatively young organization, the ACHA quickly recognized the need for helping their members find appropriate care. So, nearly 20 years ago, the first ACHD Clinic Directory was created and published on our website. Lifelong care and monitoring with the right type of heart doctor continues to be necessary for managing adult congenital heart disease. However, even today, less than 10 percent of adults with CHD get their care from an ACHD cardiologist.
While ACHA does not endorse or recommend a specific ACHD clinic or provider, we do endorse the above-mentioned guidelines. Our ACHD Clinic Directory provides our members with a reputable tool to find quality care. It is the only tool of its kind focused just on adults with CHD.
Over the years, ACHA has continually worked to improve the quality of care and access to care for all ACHD patients. We have strived to develop the highest standards to help patients determine which heart doctors and which programs offer quality care.
The recently updated ACHA Clinic Directory has more than 125 self-identified ACHD programs in the United States and Canada. Patients now have the ability to search for the 10 closest ACHD clinics to where they live. They can also search for programs that are ACHA ACHD accredited, as well as those with ACHD board certified cardiologists. Care at an ACHA ACHD Accredited Program and by a board-certified ACHD cardiologist has shown to improve quality care for ACHD patients.
For more information visit www.achaheart.org/directory.