Seamless Transitions

Penn State Health Helps Pediatric Congenital Heart Disease Patients Continue With Care Into Adulthood

When the one million children living with congenital heart disease in the U.S. become, by medical definition, adults living with congenital heart disease, the graduation is often inauspicious.

In fact, the teams of caregivers, regimented appointments and constant safeguards of their youth sometimes start to slip away. Patients miss screenings, skip appointments, and stop looking for the adult equivalent of what they had as children. Reasons vary. The patients have become attached to the specialists they’ve known for 18 years, whose care they trust — and they don’t want to change. Others simply don’t know they need to keep going.

“Some patients may believe they’re completely fixed,” said Dr. Amanda Cai, a Penn State Health cardiologist specializing in adult congenital heart disease, cardio-obstetrics and general cardiology who sees patients at Penn State Health Children’s Lancaster Pediatric Center. “They’ve had surgery or intervention for their congenital heart disease and they don’t have a lot of symptoms at present, so they may feel ‘cured.’ In some instances, they may have even been told this by previous providers. But the reality is that care for congenital heart disease is usually lifelong, especially now that the majority of patients are living to old age and seeing later complications of their congenital heart disease or acquiring non-congenital heart disease such as coronary artery disease, arrhythmias and heart failure.”

Now, doctors with the Penn State Health Program for Adult Congenital Heart Disease are working with pediatric specialists in

Lancaster County to provide a supportive and seamless transition from pediatric to adult care.

Penn State Health’s adult congenital heart disease team developed an evidence-based transition plan with colleagues in pediatrics, discussing the optimal timing and approaches for young adult congenital cardiac care patients to make their transition.

The latest American Heart Association and American College of Cardiology guidelines for care of the adult congenital heart disease patient suggest that pediatric cardiologists start the transition process for pediatric patients around 12 years of age. That doesn’t mean sending adolescents to doctors for grown-ups. Rather, 12 is when doctors should start the conversation: when the patient is older, they’ll need to keep up with a new doctor. At the same time, providers should encourage their pediatric patients to start paying attention during medical appointments so they become progressively more familiar with their conditions and can advocate for themselves, Dr. Cai says.

Transition to adult care in Lancaster County

Penn State Health Children’s Lancaster Pediatric Center, which opened in June 2022 at the intersection of Harrisburg Pike and Route 30 in Manheim Township, offers preteens and teens a familiar, comfortable environment to meet adult specialists. Connections are made; names and faces linked. And if the patients want to continue their adult care in that setting, they can. Specialists with the Penn State Health Program for Adult Congenital Heart Disease, including Cai, see adult patients at the Lancaster Pediatric Center as well as at locations in Harrisburg, Hershey, Reading, York, and State College.

In recognition of its expertise, Penn State Health’s program recently earned accreditation from the Adult Congenital Heart Association. This national organization provides education and resources exclusively for adults with congenital heart disease. Penn State Health’s program — one of only 47 nationwide to earn the accreditation — is one of the largest in Pennsylvania and among the oldest in the U.S.

“This accreditation should reassure referring providers that their patients with congenital heart disease will receive expert and specialized, evidence-based medical care for their congenital heart disease,” Dr. Cai said.

Comprehensive heart disease care for adults

Penn State Health has six adult congenital heart disease physicians and two congenital heart surgeons. The full spectrum of services for adult patients includes surgery, cardiac catheterizations and electrophysiology procedures. Complex imaging services include cardiac computerized tomography scans, magnetic resonance imaging and transesophageal echocardiograms.

The adult congenital heart disease specialists at Penn State Health welcome referrals from area physicians to Lancaster Pediatric Center and invite referring providers to discuss any questions they have about transitioning patients from pediatric to adult care. In addition to providing care for congenital heart disease, the cardiologists treat other heart conditions as well. Pregnant or post-partum women with congenital or acquired heart disease can also receive specialized care at Lancaster Pediatric Center.