As people born with congenital heart defects now live longer, challenges evolve over time
DALLAS, February 15, 2023 — Nearly 40,000 infants are born with a congenital heart defect (CHD) each year in the United States and thanks to research and medical advances, most people with CHD now survive through adulthood. According to the American Heart Association, the world’s leading nonprofit organization focused on heart and brain health for all, adults now outnumber children among the more than 2.4 million people living with CHD in the U.S.
“Congenital heart defects occur when people are born with structural abnormalities of the heart or blood vessels involving the heart. Surgery and other medical interventions are often required to address these issues,” said Anitha S. John, M.D., Ph.D., FAHA, volunteer chair of the American Heart Association’s Council on Lifelong Congenital Heart Disease and Heart Health in the Young. “It’s important to note that the majority of patients, even those with complex congenital heart defects, survive to adulthood and will need specialty heart care throughout their lives. However, beyond health and medical issues, many people living with CHDs face other challenges, especially as they transition into adulthood.”
A series of scientific statements recently published by the American Heart Association outline several of these obstacles:
“Psychological Outcomes and Interventions for Individuals With Congenital Heart Disease", published in the Association’s Circulation: Cardiovascular Quality and Outcomes journal, reviews potential psychological and social challenges that occur from infancy through adulthood among people born with heart defects and the types of mental health care that may be beneficial.
- According to the new statement, children with more complex CHDs have a 5-times higher rate of receiving an anxiety diagnosis in their lifetime compared to children without CHD.
- For adults with CHD, the rate of experiencing a mood or anxiety disorder in their lifetime is about 50%, compared to about 30% for adults in the general population.
- The statement advocates for mental health assessment and support to be part of comprehensive care for all people with CHD rather than a special service that is offered only in some places or special circumstances.
Social Determinants of Health
“Understanding and Addressing the Impact of Social Determinants of Health and Resultant Health Disparities Across the Lifespan in Congenital Heart Disease,” published in the Journal of the American Heart Association (JAHA), recognizes that disparities driven by social determinants of health limit access to the lifelong specialty care needed by people living with CHDs.
- Specialty care services are concentrated in urban areas. This can make access difficult for those who live in rural or smaller communities, as well as for those who may not have transportation or who lack flexibility in taking off time from work. Insurance status also plays a part in who has access to specialty care.
- Access may also be limited in home monitoring and visitation programs and programs to support nutrition, growth and cognitive development (such as school-based outreach), In addition, these programs may have varying levels of cultural competence for supporting underrepresented populations.
- The statements note a of lack of specialty providers to support the growing number of adults with CHD continues to grow. There are fewer than 500 board-certified specialists in adult congenital heart disease in the U.S., and they are primarily located at specialty heart centers in urban areas.
Transitioning to Adulthood
“Advances in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: A Practical Approach to Transition Program Design,” also published in JAHA, suggests key aspects of care to help children with CHDs successfully transition to adult-oriented health care.
- Young people living with CHDs may not seek care as they become adults until they are facing a health crisis.
- Extended time without routine care can have a significant impact on their long-term health and quality of life.
- The statement calls for clinicians to gain a broader understanding of transition needs and barriers to successful transition, to minimize worsening health disparities for people with low socioeconomic status and those from historically under-resourced communities.
“Many people living with CHDs have tremendous resilience in the face of multiple challenges throughout their lifetime. We must do our part to improve their experiences through better awareness of those challenges, access to specialty care and recognition of the unique physiological and psychological impacts of their condition,” said John, who is an associate professor of pediatrics at George Washington University and medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital, both in Washington, D.C. “It is important to involve individuals and families in research and in decision-making at every step.”
Through an ongoing research funding collaboration, the American Heart Association and the Children’s Heart Foundation have pledged nearly $15 million over the past 10 years.
Learn more about congenital heart defects at heart.org.
- Multimedia is available in the right column of the release https://newsroom.heart.org/news/as-people-born-with-congenital-heart-defects-now-live-longer-challenges-evolve-over-time?preview=20b09b7a34c45b4b84e873d8218e5d4d
- Spanish news release
- AHA health information: The Impact of Congenital Heart Defects
- AHA news release: Grants awarded to better understand the No. 1 birth defect
- AHA news release: Updated guideline for treating adult congenital heart disease patients (Aug. 2018)
- AHA news release: Psychological Outcomes and Interventions for Individuals with Congenital Heart Disease (July 2022)
- AHA news release: Understanding and Addressing the Impact of Social Determinants of Health and Resultant Health Disparities Across the Lifespan in Congenital Heart Disease (April 2022)
- AHA news release: Advances in Managing Transition to Adulthood for Adolescents with Congenital Heart Disease: A Practical Approach to Transition Program Design (March 2022)
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