New guidance on predicting developmental issues in people with heart defects

By American Heart Association News

Obradovic/E+ via Getty Images
(Obradovic/E+ via Getty Images)

Major advances over the past decade have changed the thinking about which congenital heart defect survivors are most at risk for challenges with neurological development, learning, emotions and behaviors across their lifespan, according to a new American Heart Association report.

The scientific statement, published Thursday in the journal Circulation, provides updated guidance for health care professionals about how to identify people at high risk for neurodevelopmental delays or disorders and how to evaluate and manage the challenges they face, from infancy to adulthood. It's an update to a 2012 AHA statement.

"Neurodevelopmental difficulties are among the most common and enduring complications faced by people with congenital heart disease," Dr. Erica Sood, vice chair of the statement's writing group, said in a news release. She is a senior research scientist and pediatric psychologist at Nemours Children's Health in Wilmington, Delaware. "These difficulties can affect a person's ability to function well at school, at work or with peers, and can affect health-related quality of life throughout childhood and into adulthood."

Congenital heart defects, the most common birth defect, refer to structural abnormalities in the heart or nearby blood vessels that occur before a child is born. Advances in treatment have helped more than 90% of people born with heart defects in developed countries to live to adulthood. But little progress has been made to reduce the risk for neurodevelopmental issues in people with the most severe defects.

The updated AHA statement provides guidance for health care professionals on how to categorize a person's risk level. It includes an updated list of factors that affect neurodevelopmental risk, such as genetic variants that can alter development of the heart, brain and other organs. Such variants are responsible for nearly one-third of congenital heart defect cases.

The report also identifies emerging risk factors, such as abnormal placental development and prolonged or repeated exposure to anesthesia or neurotoxic chemicals. And it includes a section on neuroprotective strategies, such as advances in detecting heart defects before birth and monitoring blood flow to the brain. It also covers how to evaluate and treat neurodevelopmental delays and disorders at different life stages.

"Reducing barriers that people with congenital heart disease and their families often face when trying to access neurodevelopmental supports and services and ensuring sufficient research funding are priority areas for future policies," writing group chair Dr. Bradley S. Marino said in the release. He is chief of cardiology and cardiovascular medicine at Cleveland Clinic Children's.

"More research will result in a better understanding of how to prevent and manage neurodevelopmental conditions related to congenital heart disease, which will ultimately improve neurodevelopmental outcomes and health-related quality of life for people with congenital heart disease across their life span," he said.

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