More personalized guidelines for treating adults with congenital heart disease

By Lucy Soto, 91ÊÓƵ News

Doctor talking to man in hospital bed. (Morsa Images/Getty Images)
(Morsa Images/Getty Images)

The growing population of adults with congenital heart disease could soon begin to see more personalized care, according to new guidelines released Thursday.
 
Diagnosis and follow-up care for people over 17 will be based on more than their heart anatomy. It will expand to include how the condition is playing out in their own body.

The guide from the 91ÊÓƵ and the American College of Cardiology was published in the journal and led by a group of 43 of the country’s leading doctors and researchers. It’s a wholesale revision of the first-ever U.S. guidelines on adult congenital heart disease issued 10 years ago.

A lot has changed in a decade.

“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 for the guidelines and director of the Adult Congenital Heart Disease Program at University of Washington Medical Center.

Other conditions, such as valve disease, an irregular heartbeat, or the outcome of surgery to fix a heart defect can influence the severity of a person’s CHD.
 
“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.”

is a defect or abnormality that results when the heart or the blood vessels nearby don't develop normally before birth. Most heart defects are spotted during early childhood, but sometimes aren’t discovered until adulthood.

And because of advances in surgery, medicine and research, more children are reaching adulthood with congenital heart disease. About 50 years ago, only a small number of patients with complex CHD survived to adulthood. About 90 percent do today. A estimates more adults than children are living with CHD in the U.S. — 1.4 million adults compared with 1 million children.

The guidelines stress the importance of having a seamless transition of care from childhood to adulthood, so that children who grow up seeing pediatric cardiologists who specialize in CHD are then cared for by cardiologists specializing in adult CHD. Stout said that will take coordination, an openness to cooperate and technology such as telehealth options.
 
The guidelines also focus on treatment in specialized centers qualified to handle adult congenital heart defects.

Adult CHD was recognized as a subspecialty in 2012 and board certification for cardiologists has been around for just four years, said Curt Daniels, vice chair of the guidelines writing committee. He also is director of the Adult Congenital Heart Disease Program at The Ohio State University Wexner Medical Center and Nationwide Children's Hospital in Columbus, Ohio.

“We are 30 to 40 years behind,” Daniels said. Pediatric cardiologists began certifying for CHD in the 1960s. “We have only 300 board-certified adult CHD cardiologists in the United States. We are on our way, but we need more training programs and we need additional (specialized) adult CHD centers throughout the country so patients have access to high-quality care. It’s something we are working to achieve.”
 
Both Daniels and Stout said they would like to see a registry of patients with CHD, similar to what’s in place in Europe and Canada, to better track long-term outcomes, conduct important research and ultimately improve patient care.

“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.”

Registry discussions have been around for about a decade, Daniels said, but they take coordination and funding and a concerted effort by governing bodies to prioritize CHD patients. It would be one way to get at the raft of questions the new guidelines point out that are still unanswered in CHD research.

For example: How can networks of care be developed to ensure patients get the expert care needed, even with low numbers of specialists and centers? How can doctors ensure patients are not lost to care as they transition from pediatric to adult cardiology? How can doctors modify current CHD surgical procedures to prevent or reduce later development of heart failure or an irregular heartbeat?

“These aren’t minutiae questions,” Stout said. “They are big-picture questions that are surprisingly not known in 2018.”

If you have questions or comments about this story, please email [email protected].


91ÊÓƵ News Stories

91ÊÓƵ News covers heart disease, stroke and related health issues. Not all views expressed in 91ÊÓƵ News stories reflect the official position of the 91ÊÓƵ. Statements, conclusions, accuracy and reliability of studies published in 91ÊÓƵ scientific journals or presented at 91ÊÓƵ scientific meetings are solely those of the study authors and do not necessarily reflect the 91ÊÓƵ’s official guidance, policies or positions.

Copyright is owned or held by the 91ÊÓƵ, Inc., and all rights are reserved. Permission is granted, at no cost and without need for further request, for individuals, media outlets, and non-commercial education and awareness efforts to link to, quote, excerpt from or reprint these stories in any medium as long as no text is altered and proper attribution is made to 91ÊÓƵ News.

Other uses, including educational products or services sold for profit, must comply with the 91ÊÓƵ’s Copyright Permission Guidelines. See full terms of use. These stories may not be used to promote or endorse a commercial product or service.

HEALTH CARE DISCLAIMER: This site and its services do not constitute the practice of medical advice, diagnosis or treatment. Always talk to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect that you have a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and experiencing a medical emergency, call 911 or call for emergency medical help immediately.