Smoother Transitions for Young People with Rheumatic Diseases

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More than half of teenagers and young adults with rheumatic disease drop out of rheumatology care during the transition from pediatric to adult rheumatology care. This can have serious consequences for long-term health outcomes in this population.

To address the issue, Rebecca Sadun, MD, PhD, an adult and pediatric rheumatologist at Duke University Medical Center, designed a curriculum to educate and train rheumatology fellows in “transition and transfer” skills. Funded by a Rheumatology Research Foundation Clinician Scholar Educator Award, the curriculum includes interactive workshops and education modules to increase fellows’ confidence in this area.

“Transition management requires subtle skills that often can’t be taught in the classroom during fellowship,” Dr. Sadun said. “Physicians must learn and practice these skills to get them right. The curriculum that the CSE helped fund builds fellows’ confidence to perform these crucial skills.”

Understanding the high dropout rate

When Dr. Sadun was completing her combined adult and pediatric rheumatology fellowship, she realized she was in a unique position to help rheumatology trainees through a curriculum that focuses on transition skills. The curriculum helps trainees recognize and address stumbling blocks that can arise during the move from pediatric to adult care.

“In pediatric rheumatology clinics, for example, we tend to be very liberal about a child arriving late to an appointment, since they probably weren’t the person driving,” Dr. Sadun said. “At an adult clinic, if a patient arrives late to an appointment, he or she may be advised to reschedule, which can be upsetting to a young adult patient, who had grown accustomed to flexible arrival times. The patient may take the consequence personally and may not return to that adult clinic. Rheumatologists must find ways to explain the new care scenario and new expectations to young adult patients; we must prepare transferring patients for these changes.”

Parents may be used to managing their child’s treatment decisions and being a part of every conversation. Fellows can learn techniques to help the whole family adjust to the adult clinic model.

“Communication skills training helps providers to balance everyone’s roles,” Dr. Sadun said. “As part of my curriculum, adult rheumatology fellows find their favorite wording for asking a parent to step out of the room, so that the social history can be performed confidentially.”

Ultimately, the work funded by the Foundation helps build confidence in the providers who guide young adults through this transition, so that patients remain in rheumatology care and improve their chances of good health outcomes.

“This project would not have been possible without the Rheumatology Research Foundation,” Dr. Sadun said. “This phenomenon of patients being lost to care and having poorer long-term health outcomes needs to change, and it is something we are excited and privileged to help address.”


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