Understanding and addressing neurodevelopmental challenges in congenital heart disease

More than a decade of new knowledge about neurodevelopmental risk in people with congenital heart disease has changed thinking about who is most at risk and the factors that influence neurodevelopment, learning, emotions and behaviors, according to a new scientific statement from American Heart Association published. today in the association’s flagship peer-reviewed journal Traffic.

Congenital heart disease, defined as structural abnormalities in the heart or nearby blood vessels that occur 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 into adulthood, the risk of neurodevelopmental problems when people have a more severe form of congenital heart disease has not improved significantly.

The new scientific statement, “Neurodevelopmental Outcomes for Individuals With Congenital Heart Disease: Updates in Neuroprotection, Risk-Stratification, Evaluation and Management,” describes significant progress in understanding the impact of congenital heart disease on development, learning, emotions and feelings of a person. behaviors throughout childhood and adulthood.

Neurodevelopmental difficulties are among the most common and lasting complications faced by people with congenital heart disease. These difficulties can affect a person’s ability to function well at school, work, or with peers, and can affect health-related quality of life throughout childhood and adulthood. It is important for healthcare professionals and people with CHD 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.”

Erica Sood, Ph.D., Vice Chair of the Statements Group, Senior Researcher and Child Psychologist at Nemours Children’s Health, Delaware Valley

The statement includes updated guidance for healthcare professionals on how to identify patients at high risk for neurodevelopmental difficulties and what types of assessments may be useful to better understand these difficulties. Optimizing neurodevelopmental outcomes through clinical care and research becomes increasingly critical as more patients survive into adulthood.

Key findings of the statement include:

• The algorithm for risk stratification of people with congenital heart disease into high or low risk of developmental delays or disorders has been revised to reflect the latest research.
• The statement suggests that healthcare professionals review three risk categories sequentially: Risk category 1 includes patients with a history of cardiac surgery with cardiopulmonary bypass in infancy. Risk Category 2 are people with a history of chronic cyanosis, people with blue or purple discoloration due to low oxygen levels in the blood, who did not undergo cardiopulmonary bypass surgery in infancy. Risk category 3 has two criteria. The first criterion for Risk Category 3 is a history of an intervention or hospitalization secondary to congenital heart disease in infancy, childhood, or adolescence. The second criterion is the presence of one or more factors known to increase neurodevelopmental risk.
• The statement includes an updated list of factors known to increase neurodevelopmental risk, including genetic, fetal, and perinatal effects, surgical aspects of treatment and care, socioeconomic and family influences, and factors related to growth and development. For example, genetic variants that can alter fetal development of the heart, brain and other organs cause up to a third of cases of congenital heart disease.
• There is a new section on emerging risk factors such as abnormal placental development, prolonged or repeated exposure to anesthetics, and exposure to neurotoxic chemicals.
• In addition, there is a new section on neuroprotective strategies, including prenatal detection of congenital heart disease, monitoring of cerebral blood flow and oxygen delivery, and functional support care such as physical therapy, occupational therapy, and speech pathology.
• The statement provides updated information on referral for age-based assessment of individuals with congenital heart disease at high risk for developmental delay or disorder. The statement cites guidelines from the Cardiac Neurodevelopmental Outcome Collaborative, which recommends that children with congenital heart disease at high risk for developmental delay or disorders have neurodevelopmental assessments during infancy, childhood, and adolescence.
• The statement also provides updated information on the management of developmental delay or disorder in infants, children and adolescents, as well as a new section on the management of neuropsychological deficits in adults.

“Reducing the barriers that people with congenital heart disease and their families often face when trying to access neurodevelopmental support and services and ensuring adequate research funding are priority areas for future policies,” said the chair of the statement’s writing team. Bradley S. Marino, MD. MPP, MSCE, MBA, FAHA, chief of cardiology and cardiovascular medicine at Cleveland Clinic Children’s. “Further research will lead to a better understanding of how to prevent and manage neurodevelopmental conditions associated with CHD, which will ultimately improve neurodevelopmental outcomes and health-related quality of life for people with CHD across the lifespan.” their lives”.

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 Youth, and the Council on Cardiovascular and Stroke Nursing. American Heart Association scientific statements promote greater awareness of heart disease and stroke and help facilitate informed care decisions. Scientific statements describe 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. The American Heart Association guidelines provide the Association’s official clinical practice recommendations.