Young patients with congenital heart disease must learn to manage their condition as they become adults. Here’s the heart care information you need in making this important shift.
All of us go through significant changes and milestones as we gain independence from our parents and become adults. But for pediatric heart patients, there’s a lot more to the process than getting a driver’s license or moving into that first apartment. Finding the right heart care specialist only skims the surface.
“In addition to all of those changes as young people, they also face managing their own heart disease as they get older,” says Benjamin P. Frischhertz, M.D., a cardiologist at Vanderbilt University Medical Center. Eventually, a child will move from a pediatric clinic to an adult congenital heart disease clinic. When this happens, the parents shift the responsibility of care to the patient rather than managing it for them.
“They have to learn how to make appointments, how to contact their doctor, how to call their pharmacy and get refills, and how to know when things are a problem and it’s time to seek help and go to the emergency room,” Frischhertz said. We asked Frischhertz to outline the heart care transition process and what patients and their families might expect.
Focusing on empowerment to speak about heart health
One way to prepare for the transition during pediatric care is for the physician to direct questions to the patient. As long as the patient can communicate well, Frischhertz works toward the goal of having the patient explain any conditions, rather than the parent speaking for the child. Empowering the patient to speak about heart care and health begins to set the responsibility the patient will have in the near future.
“I think focusing on the patients themselves early on allows those patients to realize that this is something that they’re going to be in charge of one day,” he said. Parents can help empower their children by encouraging participation in and understanding of care responsibilities as they mature.
Determining the right time for adult heart care
The American Academy of Pediatrics recommends transitioning children to adult-oriented health care between the ages of 18 to 21. At Vanderbilt, Frischhertz says, transitioning congenital heart disease patients takes place anywhere from age 18 to 25. The age varies based on the individual. The family and the pediatric provider will help determine the right time. Adult care cardiologists and pediatric cardiologists at Vanderbilt have a close working relationship so that they can provide the best transition possible to patients.
Preparing for the transition visit
Pediatric cardiologists will refer patients to the adult heart care clinic. Here, the patient will have an hour-long transition visit with the congenital heart disease nurse practitioner. This appointment takes place in the patient’s pediatric clinic, and covers care details and expectations in the adult congenital heart disease clinic. Patients can ask their doctor questions on ways to maintain healthy heart care down the road.
“The patient can hear their medical history, a review of their medications, and rationality for the medications,” Frischhertz said. The nurse practitioner also goes over adult behaviors that could impact the patient’s health like smoking, drinking alcohol or taking drugs. Together, the patient and nurse practitioner discuss any family-planning considerations.
The appointment also provides the patient with plenty of information about the adult congenital heart disease team and the clinic. “Usually at those visits, they meet one of our physicians,” Frischhertz said. “They can put a face to the name and ask us questions. And then their next visit is typically with us in the adult congenital heart disease clinic.”
Family is welcome to join this transition visit, of course. “Most of the time parents will come, and sometimes significant others will come, too,” Frischhertz said. “Everyone who is participating in that patient’s care will have a chance to meet us and get to know us.”
The Vanderbilt Heart and Vascular Institute’s team treats all types of cardiovascular diseases and conditions, from the common to the complex. Our team is consistently recognized by U.S. News & World Report among the best heart hospitals in the nation and the best in Tennessee. Our wide range of services are offered in convenient locations throughout the region. Call 615-322-2318.
