Challenges Persist in Adolescents With Rheumatic Disease Transitioning to Adult Care

Tara Haelle

April 30, 2021

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.

Dr Rebecca Sadun

"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.

"Young adults who are both medically and socially complex are at highest risk," said 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).

How Young Adults Prefer to Learn Transition Skills

The third study aimed to better understand the experience and preferences of young adults themselves as they transitioned from pediatric to adult care. Kristine Carandang, PhD, a postdoctoral scholar at the University of California, San Diego, and colleagues first conducted focus groups with 39 adolescents and young adults, ages 16-28 years, who had rheumatic conditions. Using the qualitative data from the focus groups, they designed a survey to capture quantitative data on young patients' experiences.

Dr Courtney Wells

"What we're always trying to work on is, how do we bring that youth voice more clearly into the research literature?" Courtney K. Wells, PhD, MSW, an assistant professor of social work at the University of Wisconsin–River Falls, said in an interview. She noted that both she and Carandang were patients with rheumatic diseases, so they had lived and grown up with disease themselves and then become researchers.

"We have the information that's in the literature, but then we also both work with youth in a couple different ways, and what we hear from youth is what we heard in our paper, but it isn't all represented in the literature," Wells said. That disconnect is why they also included two young adults as coauthors in the study.

"As much as we appreciate the model of the six components [of health care transition], we recognize that the youth voice isn't represented very well," Wells said. "The way it's written is more for doctors and policy makers and targeted for the health care system rather than the young people themselves."

Their research bore that out. Among 137 survey respondents, aged 18-28 years, the vast majority (89%) were women and most (75%) were White. Half the patients (50%) had a diagnosis of lupus.

"For 9 out of 11 self-management and self-advocacy skills examined, there was a significant difference between how adolescent and young adult patients experienced learning self- management skills versus how they would have preferred to learn the skills," the researchers concluded. "Overall, adolescent and young adult patients most frequently learned about transition skills from their parents. Most participants would have preferred to learn these skills from their rheumatology team."

For example, 46.7% of the respondents learned how to communicate their medical history from their parents, but 48.5% would have preferred to learn that from their rheumatology team. Only a quarter (24.8%) had learned that skill from their health care team.

"For most of these skills, they were getting that information from their parents, which is concerning because their parents don't necessarily have information that is accurate," Wells said. "Their parents managed their health care, and they taught them to do it the way they were doing it."

Just over one-third of respondents said they learned from their parents how to track their symptoms so they could answer the rheumatologists' questions. Only one in five respondents (20.4%) had learned this skill from their rheumatology team, but 41.2% would have preferred hearing it from their health care team, compared with 22.1% who preferred learning it from their parents.

Nearly half the respondents reported learning from their parents how to advocate for themselves when dissatisfied with their care or symptoms (49.6%) and how to talk to the office staff to make appointments, fill out paperwork, and access health records (47.4%). Just over half (51.5%) would have preferred to learn about office communication from their health care team. Preferences on self-advocacy were split between learning from parents (36.8%) and learning from their health care team (31.6%).

An Opportunity for Other Organizations to Support Transition

The researchers noted that education did not necessarily need to come only from rheumatologists. Other health care professionals, including nurses and social workers, could help young patients develop skills as well.

"They said they're also open to talking to other people, but they want their rheumatologist to lead the whole process," Wells said. While reimbursement gaps may have presented a barrier in the past, Wells said that current billing codes have removed that obstacle, allowing physicians to bill for discussing transition skills and care.

"Largely, it's a time issue," Wells said. "Rheumatologists are going to tell patients first about their disease, ask how their medication is working and how their health is. Then, if we have time, we'll cover the transition pieces, and what it boils down to is that they just don't have time."

The respondents indicated an interest in technology that can help their education and transition, such as patient portals, telehealth, and smartphone apps.

While 66.4% of respondents said they would attend an in-person health care appointment to learn skills for transitioning to adult care, 74.5% would attend a telehealth appointment, and 77.2% would complete a structured program within a patient portal.

Wells said she doesn't see many of the health care system pressures easing up to allow rheumatologists more time for transition care, but she sees an opportunity for organizations, such as the Arthritis Foundation or Lupus Foundation of America, to step in and help.

"It is a matter of being creative and that, ultimately, is the barrier: Whose job is it to make it happen?" she said. "That's where some other groups are going to need to be advocates."

Another notable set of findings from this research was the need for young patients' access to mental health and sexual/reproductive health services. Just over two-thirds of respondents preferred to discuss these topics with their rheumatology team, but only 59.1% felt comfortable starting the conversation about mental health, and only 47.4% felt comfortable broaching the topic of reproductive/sexual health. Even more patients preferred discussing use of drugs and alcohol with their health care team (71.5%), but more patients also felt comfortable initiating that discussion (72.2%).

"It may be that somebody who's trained to address those issues, especially the mental health piece, may be more appropriate to have that role, and that's part of the transition, too, these other larger life issues," Wells said. "One of the benefits of going to an adult rheumatologist is that they are the most knowledgeable and prepared to help you with those topics."

None of the individuals quoted in this story had any disclosures to report.

This article originally appeared on, part of the Medscape Professional Network.


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