A decade ago, the US saw its first ever set of Adult Congenital Heart Disease (ACHD) guidelines in 2008. With it came developed standards for treating adults with congenital heart disease, which held the management and analyzation of cases to a new light. A lot has changed over 10 years, and the time for an upgrade was overdue. The American College of Cardiology (ACC) and the American Heart Association (AHA) have recently released a long awaited guideline update for the management of Adult Congenital Heart Disease, led by chair of the guideline writing committee and UW Cardiologist Karen Stout.
Though, rather than just a few added lines, this update is a full on revision.
Utilizing data from the growing ACHD national community, the board was able to take in all the information from the past decade, and pinpoint areas of improvement. Moving forward, diagnoses will be based on more than just one’s heart anatomy, but approaching it from a whole body perspective to see what other variables may be affecting one’s heart disease. "We've accumulated enough data to be able to personalize care for patients in a sense to more closely categorize them and make follow-up recommendations and decisions based on a new set of categories," said Dr. Stout. "We've learned there are a lot of other variables," Stout said. "Just because someone has, for example, Tetralogy of Fallot or an atrial septal defect doesn't mean they are the same as others with the same diagnoses."
One of the focal points of the new set of guidelines were to efficiently and easily transition an ACHD patient’s care from childhood to adulthood. Methods that involve coordination, cooperation, and stretching existing technologies will help cardiologists connect with one another to ensure the patient can be at ease. However, all of this is just the beginning.
The ACHD community of physicians is smaller than most, and this are aware of this. Dr. Curt Daniels thinks their network is 30 to 40 years behind due to the certification of pediatric cardiologists only beginning in the 1960s. With about 300 board-certified ACHD cardiologists in the US, in order to reach their potential, they are in dire need of training programs and specialized centers. Nonetheless, ACHD cardiologists all need to do their part in conducting research and collecting real-world data to reach their next step: creating a registry. Asking each other questions, such as “how can networks of care be developed to ensure patients get the expert care needed, even with low numbers of specialists and centers, or how can doctors ensure patients are not lost to care as they transition from pediatric to adult cardiology” will guide them towards their next steps.
We are proud to have Karen as a part of our team, and would like to congratulate her on making such a huge impact on the ACHD community!