Although she was in her mid-40s, it didn’t faze Kim Edgren that most of her fellow patients in the doctor’s office waiting room were toddlers, kids and teens. What mattered was the pediatric cardiologist understood the multiple heart defects she was born with: transposition of the great arteries, pulmonary stenosis and ventricular septal defect.
[See: 17 Ways Heart Health Varies in Women and Men.]
Edgren, a North Grafton, Massachusetts, educator and mother of three, underwent heart surgery twice as a baby to have shunts placed to improve her circulation. At 9, she had an open-heart operation to repair her combination of defects.
She counts herself fortunate in that, as she was born in Worcester, she was referred to Boston Children’s Hospital. “At the time Boston was really at the forefront of congenital heart advancements,” she says. “So, being so close to Boston Children’s growing up, I obviously had access to great congenital heart care. That’s not always the case for people across the country.”
Still, for Edgren, now 51, the “pediatric patient” mantle doesn’t quite fit. Besides her ongoing cardiac care, she has had other adult medical needs, including obstetric care to assist during her pregnancies. She is now a patient with the Boston Adult Congenital Heart program, created to meet the needs of a growing cadre of survivors.
“We are now able to see cardiologists who are specialized in adult congenital cardiac care,” Edgren says. “Now with the aging population, and so many of us who are living longer with congenital heart defects, it’s a huge need.”
As a volunteer with the Adult Congenital Heart Association, which connects survivors to resources and with one another, Edgren is concerned about people who don’t live near appropriate heart programs. The association website includes an ACHD clinic directory to help locate U.S. programs.
[See: 10 Lessons From Empowered Patients.]
Three broad groups of “overage” patients would be most likely to stay with their pediatric team, says Dr. Karen McCoy, chief of pulmonary medicine at Nationwide Children’s Hospital in Columbus, Ohio, and a professor at The Ohio State University.
First are patients with severe, complex, childhood conditions, McCoy says. These might be rare genetic disorders like mitochondrial DNA depletion syndrome; or brain damage and physical complications from oxygen deprivation as a newborn infant.
With such patients, McCoy says, she and her colleagues at Nationwide Children’s would work with families and treat these patients throughout their lives regardless of chronological age.
For most young patients coming of age, independence remains the goal. However, kids who develop chronic conditions — like severe, unstable asthma — might need extra support to transition to adult care.
During their college years, McCoy says, her team ideally continues to follow such patients. Seeing them during breaks provides a good opportunity to evaluate their condition and make sure they have the medications they need. “Then once they need an adult specialist, we refer them on.”
Patients born with conditions like cystic fibrosis, which affects the lungs, digestion and other body systems, are also more likely to be seeing pediatricians even during adulthood. Not so long ago, many didn’t survive to adulthood. Now, with treatment advances and drug breakthroughs, more and more patients live into middle age and well beyond. However, the adult medical field is still catching up to these patients.
“We don’t want to offer them Cadillac care until the age of 18 or 21 and then put them on a wagon for the remainder,” McCoy says. “Because their disease gets progressively more severe during those adult years. We want someone who actually knows the disease.”
For patients like these who still see pediatricians it’s due to a lack of good alternatives and the need for a wide safety net. “If I take care of a young person with CF, I’ve got social workers, dietitians, specialized nurses and specialized pharmacists,” McCoy says. “It’s a team.”
To maintain continuity of care, some children’s medical centers are weaving in adult clinics, adult practitioners and transition programs into their services. Currently, 250 adult cystic fibrosis patients are being actively treated at Nationwide Children’s Hospital. They continue to benefit from a safety net of support services, not to mention a formulary that includes specialized CF drugs.
The pediatricians welcome the adult-centered specialists on the team. “We have some patients who are in their 70s,” McCoy says. “That would be pretty nerve-wracking if we weren’t endowed with lots of adult specialists and adult providers in this system.”
Helping adolescents transition into independence and teaching them to take responsibility for their own care remains a priority. McCoy says: “That works better than, ‘you’re 18 now — you can turn the other way in the hallway.'”
[See: How Social Workers Can Help Your Health.]
Even for young people who are perfectly healthy, moving on from the pediatrician who may have treated them their entire lives can be unsettling. Some are reluctant or not really ready to enter the adult medical world.
The transition from pediatric to adult care is important and making it better is a passion for Dr. Lynn Davidson, an attending pediatrician with Children’s Hospital at Montefiore in New York City. Preparing young people to truly take responsibility for their own health is a gradual process that starts early if done properly, says Davidson, who has done extensive research in transition gaps. She’s currently leading a pilot study at Montefiore’s Family Care Center to study transition readiness among patients in their mid-teens.
“It’s not that we are handing our 16-year-olds or our 14-year-olds the adult providers at that stage,” says Davidson, also an assistant professor of pediatrics at Albert Einstein College of Medicine. “It’s the ability to give youths more and more credit for understanding their responsibility with the care needs, so they can become excellent consumers for their medically oriented care.”
On their end, adult practitioners need to be ready to take over new patients, as well. Complete summaries on their electronic medical records, and in some cases, an email from Davidson to suggest individual approaches help smooth the transition process.
For young patients both with and without complex medical problems, Davidson says, the goal is to “get them ready so the handoff to adult-oriented care is a warm handoff, and is expected and accepted.”
At Montefiore, for example, the pediatric hematology department is using a transition navigator for patients with sickle cell disease, to evaluate and improve their knowledge of their condition and facilitate the warm handoff to adult providers.
In general, as kids become more comfortable bringing up health concerns to their providers, asking questions about their conditions and medications, staying on top of prescriptions and treatments and being aware of symptoms, their parents increasingly step back. “I always tell patients that at 18, your parents become your consultants,” Davidson says. “They’re no longer the decision-makers.”
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When Adults Still See a Pediatrician originally appeared on usnews.com
