When Jeff Vetor goes for his annual pediatrician visits, the part that usually throws the nurse is when they go to take his vitals. “The hardest part is when they have to find the right size blood pressure cuff,” Vetor said.
At age 46, “I’m the biggest kid there,” laughs Vetor. He is a patient at Children’s Hospital of Michigan, where he has been treated for a congenital heart defect, called pulmonary stenosis, for most of his life.
For a few years in his thirties, Vetor switched to an adult doctor. But when Vetor’s son was born with the same condition, he took the baby to the hospital of his childhood, and soon decided to return as a patient himself. “For a while he and I had the same pediatrician,” Vetor said with a laugh.
Adult patients keep their pediatricians for a variety of reasons. Those with developmental or intellectual disabilities might remain with their pediatricians into adulthood, because changing doctors could be especially traumatic. Other adults may simply have not gotten around to shopping for an internist. But people with lifelong conditions — like congenital heart defects, sickle cell disease, or cystic fibrosis — can have an especially difficult time graduating to adult care.
For Vetor, part of it is the approach. “I really like going there. Pediatricians are more friendly and personable. And if you have a question, they have time to answer.”
He said that his pediatrician regularly consults with internists to coordinate his care, especially now that he is middle-aged.
“Well, I’m starting to have some of the old symptoms, and we have to figure out if it’s the condition or if it’s just that I’m old and out of shape,” he said. “Before, when you had my condition, you didn’t live long enough for that to come up. I think that’s why the doctors at Children’s don’t mind that I still come there.”
‘Jumping off the diving board into the deep end’
While doctors have to be certified to treat children, there are no rules for when a patient must switch to another doctor once the patient reaches adulthood. The American Academy of Pediatrics recommended, in 1938, that patients be no older than 18 years of age. In 1969, it raised the recommended age for ending pediatric care to 21.
But since then, the prognosis has greatly improved for conditions that once led to childhood deaths. Patients are surviving longer, to the point of outgrowing the need for a pediatrician, said Boston Children’s Hospital spokesperson Irene Sege.
For example, 20 years ago sickle-cell disease patients were dying by age 30, “But now, they are living into their 50s or 60s, so it makes sense for them to have adult care,” Sege said.
Some doctors and hospitals have responded with programs to make it easier for adult patients to leave their pediatricians. For instance, Seattle Children’s Hospital has a formal transition program, where patients as young as 12 get to know the doctors for grown-ups.
“We try to make it as nonthreatening at possible,” Deen said. “We tell the child, ‘Sometime in the future, you will see a doctor like me.’” Then the hospital follows the young patients, introducing age-appropriate health issues over time. “Like, at 16, we’ll start talking about sexual health and pregnancy concerns,” Deen said.
But it can be a confusing and arduous process, especially for young adults with complicated health conditions, said Diane Pickles, whose son Jake, age 22, recently left his pediatrician. Born with hypoplastic left heart syndrome, Jake had been a patient at Boston Children’s Hospital since he was an infant.
“The transition to adult care is like jumping off the diving board into the deep end,” said Pickles.
By the time a patient with a chronic condition reaches adulthood, there is a well-established relationship not only between the child’s family and the pediatrician, but also between that pediatrician and the various specialists helping to manage the condition. Recreating that can be a challenge, said Pickles.
“It’s hard to find a primary care doctor who will give you the time and the focus you had with the pediatrician for all those years,” she said. “Even when my son was 17, his cardiologist said to hold on to the pediatrician until they kick us out.”
Delaying the switch
The late teens and early 20s can also be a inopportune time to change doctors, said Dr. Susan Arnold, a pediatric neurologist at University of Texas Southwestern Medical Center. “A child goes off to college, where it’s hard to get set with a health care provider in a place where they won’t be living permanently anyway,” she said. “So they follow up with their pediatrician.
“I had a young man with epilepsy who went off to college,” she added. “I told him to see me on breaks and I would refill his medicine and do his checkups.”
Insurance can also keep grown-up patients with pediatricians. In some states, the Children’s Health Insurance Program (CHIP) covers pediatric care up to age 19 or 20, leading some to postpone transitioning until that age. Other patients start off as children on family insurance plans covering pediatric doctors and specialists. Since children can remain on their parents’ insurance until age 26, these young people sometimes keep their doctors along with their coverage.
Still, a pediatrician with grown-up patients can run into unusual situations, said Arnold, whose oldest patient is 27. She recalled a visit with a longtime patient, his father, and his fiancee.
“She wanted to know about his epilepsy,” Arnold recalled. “But then, we got to counseling them on things about the wedding night. And his dad was in the room! And I’m like, ‘Maybe it’s about time to find an adult specialist, preferably a gentleman, who can answer those questions.’”
Vetor jokes about being a “veteran” pediatric patient.
“I’ve retired a few doctors and nurses,” he said. “And now some of them are younger than me.”
This article is reproduced with permission from STAT. It was first published on May 1, 2017. Find the original story here.