New guidelines have been released that will provide a more personalized treatment plan for those suffering from congenital heart disease.  The American Heart Association and the American College of Cardiology published the updated and revised guidelines in the journal Circulation.  This is the first wholesale revision in 10 years of the U.S. guidelines on adult congenital heart disease done by 43 of the nation’s leading doctors and researchers.

Congenital heart disease (CHD) defects occur when the heart or blood vessels do not develop normally before birth. CHD is usually detected in early childhood, but sometimes may not be determined until adulthood. Due to medical advancements, surgery and research, many children now survive into adulthood with the disease. About 90 percent of children reach adulthood compared to 50 years ago when only a small number did so.  According to the recent research, there are approximately 1.4 million adults living with CHD today.


More Data Means Personalized Care

“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. Karen Stout, chair of the writing committee on the new guidelines and Doctor of the Adult Congenital Heart Disease Program at University of Washington Medical Center.

There is a real impact on the severity of congenital heart disease by other conditions such as valve disease, irregular heartbeat or other heart defects.  “We’ve learned there are a lot of other variables,” said Dr. Stout.  “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.”


Seamless Care from Childhood to Adulthood

The new guidelines emphasize the necessity of having a seamless transition of care from childhood into adulthood, so that children are able to transition from pediatric cardiologists specializing in treatment of CHD to cardiologists specializing in adult CHD. Dr. Stout said that this will take coordination and the willingness on the part of health care providers to ensure an openness to work together.

The guidelines recommend that treatment centers be established that specialize in treating adult congenital heart defects, and that a registry be established to better follow long term outcomes, conduct research and to better treat those with the disease. Currently only 300 U.S. cardiologists are board certified adult CHD subspecialists. This subspecialty was established and recognized in 2012.

“What we don’t know is a great opportunity to do research differently than what we have done in the past,” Stout said.  “We need a registry and to think differently on how we get real-world data.”

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