Statement Highlights:
Embargoed until 4 a.m. CT/5 a.m. ET Thursday, Feb. 22, 2024
DALLAS, Feb. 22, 2024 — More than a decade of new knowledge about neurodevelopmental risk in people with congenital heart disease has changed the thinking about who is most at risk and the factors that impact neurological development, learning, emotions and behaviors, according to a new American Heart Association scientific statement published today in the Association’s flagship, peer-reviewed journal Circulation .
Congenital heart disease, defined as structural abnormalities in the heart or nearby blood vessels that arise before birth, is the most common birth defect. While advances in treatment have helped more than 90% of people with congenital heart disease in developed countries live to adulthood, the risk of neurodevelopmental issues when individuals have a more severe form of congenital heart disease has not meaningfully improved.
The new scientific statement, “Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management,” describes the significant advancement in understanding the impact of congenital heart disease on an individual’s development, learning, emotions and behaviors throughout childhood and adulthood.
“Neurodevelopmental difficulties are among the most common and enduring complications faced by people with congenital heart disease. 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,” said Vice Chair of the writing statement group Erica Sood, Ph.D., a senior research scientist and pediatric psychologist at Nemours Children’s Health, Delaware Valley. “It is important for health care professionals and individuals with congenital heart disease and their families to understand how common neurodevelopmental difficulties are. It is also important to understand what places a person with congenital heart disease at high-risk for these difficulties, as well as how these difficulties can be prevented or managed.”
The statement includes updated guidance for health care professionals on how to identify which patients are at high-risk for neurodevelopmental difficulties and what type of evaluations may be helpful to better understand these difficulties. Optimizing neurodevelopmental outcomes through clinical care and research has become increasingly critical since more patients are surviving into adulthood.
The key findings of the statement include:
“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,” said Chair of the statement writing group Bradley S. Marino, M.D., M.P.P., M.S.C.E., M.B.A., FAHA, 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.”
This scientific statement was prepared by the volunteer writing group on behalf of the American Heart Association’s Council on Lifelong Congenital Heart Disease and Heart Health in the Young, and the Council on Cardiovascular and Stroke Nursing. American Heart Association scientific statements promote greater awareness about cardiovascular diseases and stroke issues and help facilitate informed health care decisions. Scientific statements outline what is currently known about a topic and what areas need additional research. While scientific statements inform the development of guidelines, they do not make treatment recommendations. American Heart Association guidelines provide the Association’s official clinical practice recommendations.
Additional members of the writing group are Jane W. Newburger, M.D., M.P.H., FAHA; Julia S. Anixt, M.D.; Adam R. Cassidy, Ph.D., L.P.; Jamie L. Jackson, Ph.D.; Richard A. Jonas, M.D.; Amy J. Lisanti, Ph.D., R.N., FAHA; Keila N. Lopez, M.D., M.P.H.; and Shabnam Peyvandi, M.D., M.A.S., FAHA. Authors’ disclosures are listed in the manuscript.
The Association receives funding primarily from individuals. Foundations and corporations (including pharmaceutical, device manufacturers and other companies) also make donations and fund specific Association programs and events. The Association has strict policies to prevent these relationships from influencing the science content. Revenues from pharmaceutical and biotech companies, device manufacturers and health insurance providers, and the Association’s overall financial information are available here .
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About the American Heart Association
The American Heart Association is a relentless force for a world of longer, healthier lives. We are dedicated to ensuring equitable health in all communities. Through collaboration with numerous organizations, and powered by millions of volunteers, we fund innovative research, advocate for the public’s health and share lifesaving resources. The Dallas-based organization has been a leading source of health information for a century. During 2024 – our Centennial year – we celebrate our rich 100-year history and accomplishments. As we forge ahead into our second century of bold discovery and impact, our vision is to advance health and hope for everyone, everywhere. Connect with us on heart.org , Facebook , X or by calling 1-800-AHA-USA1.
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Circulation
Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation, and Management: A Scientific Statement From the American Heart Association