The inadequacies and challenges of transitioning pediatric rheumatology patients to adult care were highlighted in several research studies shared at the annual scientific meeting of the Childhood Arthritis and Rheumatology Research Alliance.
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“Not surprisingly, these studies demonstrate that transition challenges remain pervasive,” Rebecca Sadun, MD, PhD, who was not involved in any of the research, said in an interview. Nevertheless, she pointed out that one of the studies showed that eight of nine sites participating in one of the studies had at least developed a formal transition policy, and three were able to fully integrate that policy into their health care system despite the ongoing pandemic.
In that study, Joyce Chang, MD, of the Children’s Hospital of Philadelphia and colleagues used structured interviews and then quantitative research to explore processes for transition polices across nine rheumatology sites. Aside from the three that had already implemented their policies, three others were preparing implementation. The other three withdrew because of COVID-19. None of the sites had reached sustainment phase. Six of the sites had access to a social work network, and two sites had fewer than four providers.
The authors found that a higher level of change efficacy or change commitment using the Organizational Readiness for Implementing Change framework did not correspond with reaching implementation.
“The first sites to reach implementation had access to [information technology] support and involved nursing, though this was not sufficient or necessary,” the authors wrote. They noted the need for strategies to reduce the burden of data collection to improve the resilience of implementation efforts against health care system stress.
Who more often transitions to adult care?
Effective transition policies can help reduce the likelihood of young patients falling through the cracks as they grow from adolescence into young adulthood, especially those at highest risk for losing continuity of care.
Dr. Rebecca Sadun
“Young adults who are both medically and socially complex are at highest risk,” said Dr. Sadun, an assistant professor of adult and pediatric rheumatology at Duke University, Durham, N.C. “This is especially true for patients with systemic illnesses, patients requiring biologic medications, and patients with custody, transportation, and financial barriers.”
Research led by Emily A. Smitherman, MD, an assistant professor of pediatric rheumatology at Children’s of Alabama in Birmingham, looked more closely at who is and is not transitioning their care. The researchers analyzed retrospective data from the CARRA Registry, including the Long-Term Follow-Up Call Registry, through December 2019. Among 1,311 patients with inactive status, 537 of these patients had juvenile idiopathic arthritis and were aged at least 18 years. Only 186 of those patients, however, had data in the Long-Term Follow-Up Registry. Patients who were Black or had lower income were less likely to have data in the Long-Term Follow-Up Registry.
Just over half the patients in the long-term registry had transferred their care to an adult rheumatologist, and 83% overall were under the care of any physician. Patients who transferred their care were significantly more likely to have private insurance (87% vs. 70%; P = .009) and were more likely to be full-time students (74% vs. 58%; P = .036).
The researchers found no association between patients’ disease status at their last CARRA Registry visit and a successful transition to adult care. However, those who had transferred care to an adult rheumatologist tended to have a higher median level of pain (4 vs. 2 on a scale of 0-10) and more disease activity (3 vs. 1 on 0-10 scale) than did those who had not transferred care (P = .022 and P = .011, respectively). A higher proportion of those who transferred care had also experienced morning stiffness over the past week (49% vs. 30%; P = .015).