Anne Marie Valente, MD, the outpatient director of the Boston Adult Congenital Heart Service (BACH), says there is no set age at which every person should transition from a pediatric cardiologist to an adult congenital specialist. “It’s a process that begins with teenagers increasingly taking ownership of their own care,” she says. “Lots of times, patients seek out an adult specialist because of a life event; for women, it’s often pregnancy. We want the transition to be a process and a partnership between the patient, family and cardiology teams.”
Valente says that pediatricians can assist with a heart patient’s transition to adult care by making the initial contact to the pediatric cardiologist proposing the idea. Her colleague Frances (Kitty) O’Hare, MD, director of transition medicine for Primary Care at Boston Children’s and to whom Valente and the BACH group often refer patients needing an adult primary care provider (PCP), agrees, adding that this is “well within the role of the pediatrician.”
“A lot of people assume the specialist will initiate transition,” says O’Hare, who is dual-trained in internal medicine and pediatrics, sees children and adults, and has a specific interest in optimizing the transition of care from pediatrician to adult providers, including specialist providers. “But that’s not very often the case.”
Remember the whole patient
It is easy to get “tunnel vision” and focus on a patient’s largest medical issue when it’s heart disease. However, this can have very serious implications. One recent study found that as a group, adults with congenital heart disease are getting fewer cancer screenings than recommended by the American Cancer Society. As patients age, PCPs need to remain aware of these trends and provide the proper education and support.
O’Hare stresses that the PCP plays a vital role as the “medical home” for a patient. He or she is the best point person to connect with the patient’s entire care team and care for the kinds of preventative and overall health needs that are not covered by specialists.
“There is a difference between transfer and transition,” O’Hare emphasizes. “Transition refers to all of the planning, preparation and skill building that leads up to and surrounds the actual transfer of care.”
Gregory Young, MD, president and CEO of the Pediatric Physicians’ Organization at Boston Children’s Hospital, stresses that any transition in care is a very important step for patients and families. Because careful consideration takes time, he says, “I introduce the idea of transitioning to an adult congenital cardiologist well in advance, in the early high school years.” The American Association of Pediatrics recommends starting this discussion with patients when they are 12-14 years old.
When it comes to clinical communication before, during and after a patient’s transition, both Valente and O’Hare agree that even today’s most sophisticated electronic health records cannot improve on the old-fashioned phone call or email. Cardiac clinic notes can often be very long and technical; therefore, “we end up talking on the phone more than anything else,” says Valente.
A time of change
The transition to a new cardiac specialist often (but not always) coincides with the transition from a pediatrician to an adult primary care provider. There is a growing trend for pediatricians and pediatric specialists alike to continue to see patients into their early twenties, and typically, this is the age when patients seek out an adult cardiologist. Some patients feel that it is easier to transition all of their care at the same time, while others prefer to space things out.
The early twenties are also a time when many young people are moving away for college, jobs or other endeavors. Depending on the circumstances, Young says, it may be useful for patients to know of a specialist who practices close to their new campus homes. Young adults with serious cardiac conditions may want to ask their current cardiologist if he or she can recommend a nearby specialist in case of an emergency.
Young emphasizes that the timing of any transition is relative to the individual patient and family circumstances. Finding the right personality fit in a new physician is important and deserves thoughtful reflection.
Key advice for pediatricians:
- Start the discussion about transition early, and revisit the topic at least once a year.
- Stay in communication with your patients’ pediatric cardiologists throughout the transition period.
- Remember that all patients with congenital heart disease need a lifelong continuum of care.