Equipping Campus Health to Care for Young Adults with Congenital Heart Disease

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

University or College Health Centers

Establish and financially invest in systems to identify incoming youth with medical complexity, such as CHD, and set up initial transition appointments.
Ensure that affordable health insurance plan options are available to all students.
Create transition, transfer, and onboarding processes and care plan templates that clearly identify the roles and responsibilities of the college health center staff who care for students with medically complex conditions, like CHD.
Create processes for students with CHD who come to campus already out of care to appropriately connect with needed care.
Maintain clinical registries for students with medical complexity.
Build relationships with adult congenital heart specialists in the community (or closest community) or student’s local ACHD cardiologist to ensure that students with CHD can receive appropriate care while on campus.
Assure that procedures are established to implement an immunization policy through the admissions process and that students are up to date on immunizations (e.g., influenza, meningitis).
Work with university or college athletic programs, including club and intramural sports programs, to ensure that student-athletes receive the appropriate CHD-related care considerations, participation permissions, and support.
Work with university or college student support programs to ensure that students are able to receive needed accommodation for doctor appointments and procedures, as well as to help overcome transportation, insurance, or other barriers to such care.

Health Care Providers

Empower students with CHD to engage in their own cardiology care and preparation for college, preparation that includes discussion about health insurance coverage.
CHD providers should work with university or college health centers to establish referral networks and help educate college health providers when referrals are necessary.
Further clarify the roles and responsibilities of college health clinical staff in the coordination of care for students with CHD.

Students (and Their Loved Ones)

Enter college with a baseline level of knowledge of their CHD, current medications, and medical and surgical history.
When possible, provide your medical summary to student health centers in advance of campus arrival.
Ensure that preparation for college includes continuous health insurance coverage.
Establish services with a local pediatric or adult congenital cardiologist for urgent or emergent situations.
Encourage the student’s local congenital cardiologist to reach out to the college health center and/or provider to work together as a team while the student is in college to ensure optimal care for the student.
If not already receiving congenital cardiology care at home or within your local campus community, work with student health centers to re-establish congenital cardiology care.
Utilize digital, print, and wearable healthcare data modalities for care coordination needs and ask existing CHD providers to create a care plan.

Health Care Systems

Create infrastructures to support the cardiac and non-cardiac health needs of students with CHD that include care coordination, community resources, and mental health.
Effectively recruit and retain adult congenital cardiology providers typically underrepresented in medicine.
Create and promote financing and care coordination models that incorporate student heath with considerations for geographic networks that lack local congenital cardiology care.
Develop care models that facilitate communication between pediatric and adult congenital cardiology care teams in university or college communities, student care teams in their local (non-college) communities, university or college student health centers, and students with CHD.

Additional Resources

Young adults with congenital heart disease heading to college: Are college health centers and providers prepared? Hardy, Rose Y. PhD; Babu, Suhas BS; Jackson, Jamie L. PhD; George, Sandra MPH; Andrews, Jennifer G. PhD; Daskalov, Rachel MHA; May, Susan C.; Miller, Paula MSN, RN; Timmins, Susan BA; Pike, Nancy A. PhD, RN, CPNP-AC/PC, FAAN; for the Congenital Heart Public Health Consortium

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.

Last Updated

03/04/2024

Source

American Academy of Pediatrics