While all children with special health care needs require support to transition into adult care, this call to action focuses on the most common birth condition: congenital heart disease (CHD). Because of improvements to medical care and treatment, children with CHD are living longer and healthier lives.

In 2021, an estimated 6.5 million adolescents (ages 12 to 17) with special health care needs were growing up in the US. These are children who needed additional care or services for chronic physical, developmental, behavioral, or emotional conditions beyond the general care needs of children their age. However, only 21% of them received the services necessary to make the transition into adult care.

Currently, an estimated 300,000 US adolescents are living with a heart condition, with the adult CHD population growing by 40,000 to 50,000 each year. As this population grows, ensuring that children with this common condition transition appropriately into adult congenital cardiology care is critical to their health and well-being.

Although guidelines around well-timed transitions into adult care have been proposed, full implementation has not yet occurred. More young adults with CHD are attending post-secondary educational settings, such as universities, than ever before. They are often headed there without being properly prepared or connected to system(s) that will support their ability to flourish on campus. This concerning, but preventable, situation becomes more urgent as this population grows and ages without appropriate care.  

Students with CHD require unique adult congenital heart disease (ACHD) care considerations. General adult cardiologists, who are experts in acquired heart disease, may be unfamiliar with these issues. In addition, the burgeoning adult care needs and considerations may be less known to the pediatric cardiologists from whom students receive care. As a result, students with CHD entering college settings are vulnerable to lapses in care or receipt of inadequate care. Literature reports an alarming 50-85% of students in that age group experience such lapses, leading to higher mortality, higher societal costs, and greater need for urgent procedures- all of which are preventable with adequate timely care.

In addition, it is a time in their life when young adults with CHD become independent and take on more of the responsibility for their care. While exciting, this period can also result in missed medications or appointments. Also, limited access to ACHD care can lead to more urgent or emergency situations creating worse outcomes. This developmental time in their lives, in addition to new environments and potentially new medical settings, can put college students with CHD in a vulnerable position and at risk for not receiving adequate congenital cardiology attention. Ensuring that preventive care and ACHD consults occur and that appropriate urgent/emergent care plans are in place for these students is critical. Women with CHD have an increased risk of maternal and infant morbidity and mortality. Therefore, college health planning for young women with CHD should include, but not limited to, contraception and reproductive health considerations. Furthermore, it is a time when close communication with athletic programs and Offices for Students with Disabilities is necessary for students to remain healthy enough to fully engage in the athletic, recreational, and educational opportunities on campus. Such communication may be required to coordinate time off from classes to attend cardiology and general health related appointments, accommodations in class or dorm settings, or health considerations for sports participation.  

While few college health centers have systems in place to identify students with chronic medical conditions, many have the capacity to provide primary care and chronic disease management for some clinical conditions. A student health center has the opportunity to be the medical home for these students. The student health center’s ability to work with students and coordinate with other departments on campus as well as with congenital heart specialists in the community is essential for students with CHD on university and college campuses. While this call to action focuses on students with CHD, it can provide a blueprint for other students with other common complex chronic conditions.  

We call on health care providers, university or college health centers, families, and health care systems to work in concert to inform students with CHD about the importance of maintaining cardiology follow-up care during their college careers and make such follow-up care easily accessible to those students. Doing so will offer the student the best chance to thrive while in college, and beyond. 

Calls to Action to Support Students with Congenital Heart Disease

Additional Resources

The Congenital Heart Public Health Consortium (CHPHC) is supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS). The outputs of the CHPHC are solely the responsibility of the CHPHC and do not necessarily represent the official views of, or an endorsement by, the member organizations of the CHPHC, CDC/HHS, or the U.S. Government.

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American Academy of Pediatrics