Self-Driven Care Can be Difficult for Adolescents Transitioning from Pediatric to Adult Rheumatology Provider

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When treating adolescent patients who are making the important, sometimes bumpy crossing from a pediatric to an adult rheumatology practice, there’s no one-size-fits-all approach.

“We have to be flexible on the receiving end when talking with these patients, and flexible with their families, too,” says Peter A. Nigrovic, MD, director of the Center for Adults with Pediatric Rheumatic Illness (CAPRI) at the Brigham and Women’s Hospital and associate professor of medicine at Harvard Medical School. He’s also an attending physician at Boston Children’s Hospital. While one becomes a legal adult at 18, “cognitively, nothing happens abruptly. Everything happens gradually,” he says.

Dr. Nigrovic’s perspective on pediatric-to-adult care transitions is unique. He’s board certified in both pediatric and adult rheumatology, one of only about 30 such rheumatologists in the U.S. His research delves into how to best manage transition and the unique mechanisms of the conditions he treats. While these kids grow up, their chronic diseases are quite different from the adults they will one day sit beside in rheumatology waiting rooms.

At CAPRI, Dr. Nigrovic’s team includes two other attending physicians, a clinical fellow, a registered nurse, a physical therapist and a licensed clinical social worker. More than 500 patients have gone through transition at the clinic, founded in 2005. Patients are often referred directly to CAPRI by local pediatric rheumatologists. Some CAPRI patients are students coming to Boston to attend college who need a new rheumatology practice to continue their treatment.

Out on Their Own

Patients, their parents and clinicians all face challenges when adolescents transition from pediatric to adult rheumatologic care. Transition often starts around age 16, but “patients transition at different times and for different reasons. Sometimes, it’s just because they are getting older,” Dr. Nigrovic says.

One reason some patients transition is provider fatigue. “They have been at one practice for a while and need a fresh start. They need a new perspective on their care. Teens get sick of being in pediatric rheumatology practices, sitting in a waiting room full of toys and games. They don’t feel they belong there.”

Although patients may be ready to move on, self-management of a chronic, serious disease brings unfamiliar hurdles, Dr. Nigrovic says. Tasks that may seem simple to adults, such as scheduling an appointment or refilling prescriptions, are brand-new responsibilities for these patients. The Affordable Care Act allows children to stay on their parents’ insurance policies through age 26, which eases some of the financial stress of transition for many of his patients, he says.