Guest Post: Navigating Care for Young Adults With Congenital Heart Disease

Author Laura Pickler, MD, MPH
Posted on June 26, 2023

According to the Centers for Disease Control and Prevention, congenital heart disease (CHD) affects nearly 1% of children born each year in the United States. Thanks to advancements in medical care, most patients with noncritical CHD are now reaching adulthood.

The transition from pediatric to adult health care can be overwhelming for young adults with CHD as they navigate the unfamiliar territory of adult-oriented medical systems. It is crucial for primary care clinicians to establish a smooth health care transition process, involving multidisciplinary collaboration, to ensure continuity of care. Got Transition, a program of the National Alliance to Advance Adolescent Health, outlines an approach featuring Six Core Elements of Health Care Transition that translate well into medical practice. Young adults need comprehensive education and support to develop self-management skills, understand their condition, and take responsibility for their health. Many resources are available to assist during this process. Excellent tools are available online at Got Transition for clinicians, youth, and their families. Whether a family physician is providing ongoing primary care for an emerging adult with CHD or receiving a young adult into their practice for primary care, there is a defined role for the physician to play in achieving optimal outcomes.

Individuals with CHD require lifelong cardiac surveillance to monitor their condition and detect any potential complications. Regular cardiology follow-ups, including echocardiography and electrocardiography, play a vital role in identifying changes in cardiac function and structure. Close monitoring allows for timely intervention, potentially preventing or minimizing adverse outcomes. It is important for young adults with CHD to have regular check-ups and to adhere to the recommended surveillance protocols.

For young women with CHD, pregnancy planning requires careful consideration and specialized care. Pregnancy places increased demands on the cardiovascular system, and certain cardiac conditions may pose additional risks. It is essential for these women to receive preconception counseling from a multidisciplinary team, including cardiologists with expertise in adult congenital heart disease. By optimizing cardiac function and closely monitoring the pregnancy, health care providers can ensure the best possible outcomes for both the mother and the baby.

Family physicians can play a vital role in referring patients to a congenital cardiologist when those patients aren’t getting the care they need. For help finding adult congenital cardiologists, check out the ACHD Clinic Directory. 

To learn more and access helpful resources, check out:

• The AAP Congenital Heart Defects Toolkit
• Congenital Heart Defects Resources from CDC
• The Congenital Heart Public Health Consortium

The care of young adults with congenital heart disease presents unique challenges that require a comprehensive and multidisciplinary approach. By facilitating a smooth transition to adult primary and cardiology care, ensuring lifelong cardiac surveillance, and offering specialized care for pregnancy planning, family physicians can empower these individuals to lead healthy and fulfilling lives.