Why some adolescents with chronic illnesses never transition to adult care

May 1, 2010

Sometimes, people with rare, childhood-onset chronic illnesses are reluctant to leave their pediatricians.

Megumi J Okumura, MD, was still in her pediatric-internal medicine residency program when she noticed something peculiar at the children's hospital where she worked: a large number of adults who were still seeing pediatricians.

Patients as old as 40 were still visiting the children's hospital, leaving her to wonder why they had never transitioned to an internist or family physician. Typically, she found out, it was because they had rare, childhood-onset chronic illnesses and were reluctant to leave their pediatricians-or felt they couldn't find adult-care doctors who were comfortable treating them.

"I didn't know if it was just a fluke," Okumura says. "I wanted to find out just how big this problem was."

When internists were asked whether they would feel comfortable serving as a primary care physician for a 17- to 25-year-old patient with one of the chronic conditions listed, they expressed the lowest comfort levels with sickle cell disease at 32%, complex congenital heart disease at 16%, and cystic fibrosis at 15%.

Pediatricians reported a higher comfort level with all 3 conditions-more than twice that of internists for cystic fibrosis and heart disease. The most cited reason for internists' discomfort, Okumura says, was a lack of exposure to patients in their practices with these conditions. Among the internists responding to the survey, 78% had treated cystic fibrosis and 94% had treated sickle cell disease in residency.

Communication will improve the transition process, but proper preparation for future internists will require more than just additional medical school instruction or exposure during residency, says pediatrician Jonathan Pletcher, MD, of the Children's Hospital of Pittsburgh.

"There is a tremendous need for internists to learn more about traditional pediatric illnesses," he says. "My efforts to engage residency directors and other faculty, however, have been met with the attitude that the training will not happen unless questions regarding congenital and pediatric illnesses are included on board exams."

Okumura is trying to do her part as well. She leads a transitioning program at the University of California, San Francisco, where she is an adjunct assistant professor of pediatrics, to help chronically ill children find adult-care physicians. But given the many challenges facing primary care, she is concerned that the issues may go deeper than the comfort level of the internist taking on a new adolescent patient with chronic health conditions.

"For me, it's not just a comfort-level issue," she says. "It's really addressing how we improve our own healthcare system so that primary care physicians can learn about and get the support necessary for these patients."