Pre-Transfer Rheumatologist Visits Smooth Adolescent Transition
NEW ORLEANS — Implementing a pediatric transition program in which a patient meets with both their pediatric and soon-to-be adult rheumatologist during a visit before formal transition resulted in less time setting up the first adult visit, according to research presented at the Pediatric Rheumatology Symposium.
The presentation was one of two that focused on ways to improve the transition from pediatric to adult care for rheumatology patients. The other, a poster from researchers at Baylor College of Medicine in Houston, took the first steps toward learning what factors can help predict a successful transition.
Dr John Bridges
“This period of transitioning from pediatric to adult care, both rheumatology-specific and otherwise, is a high-risk time,” John M. Bridges, MD, a fourth-year pediatric rheumatology fellow at the University of Alabama at Birmingham (UAB), told attendees. “There are changes in insurance coverage, employment, geographic mobility, and shifting responsibilities between parents and children in the setting of a still-developing frontal lobe that contribute to the risk of this period. Risks include disease flare, and then organ damage, as well as issues with decreasing medication and therapy, adherence, unscheduled care utilization, and increasing loss to follow-up.”
Bridges developed a structured transition program called the Bridge to Adult Care from Childhood for Young Adults with Rheumatic Disease (BACC YARD) aimed at improving the pediatric transition period. The analysis he presented focused specifically on reducing loss to follow-up by introducing a pre-transfer visit with both rheumatologists. The patient first meets with their pediatric rheumatologist.
During that visit, the adult rheumatologist attends and discusses the patient’s history and current therapy with the pediatric rheumatologist before entering the patient’s room and having “a brief introductory conversation, a sort of verbal handoff and handshake, in front of the patient,” Bridges explained. “Then I assume responsibility for this patient and their next visit is to see me, both proverbially and literally down the street at the adulthood rheumatology clinic, where this patient becomes a part of my continuity cohort.”
Bridges entered patients from this BACC YARD cohort into an observational registry that included their dual provider pre-transfer visit and a post-transfer visit, occurring between July 2020 and May 2022. He compared these patients to a historical control cohort of 45 patients from March 2018 through March 2020, who had at least two pediatric rheumatology visits prior to their transfer to adult care and no documentation of outside rheumatology visits during the study period. Specifically, he examined at the requested and actual interval between patients’ final pediatric rheumatology visit and their first adult rheumatology visit.
The intervention cohort included 86 patients, mostly female (73%), with a median age of 20. About two thirds were White (65%) and one third (34%) were Black. One patient was Asian, and 7% were Hispanic. Just over half the patients had juvenile idiopathic arthritis (58%), and 30% had lupus and related connective tissue diseases. The other patients had vasculitis, uveitis, inflammatory myopathy, relapsing polychondritis, morphea, or syndrome of undifferentiated recurrent fever.
A total of 8% of these patients had previously been lost to follow-up at Children’s of Alabama before they re-established rheumatology care at UAB, and 3.5% came from a pediatric rheumatologist from somewhere other than Children’s of Alabama but established adult care at UAB through the BACC YARD program. Among the remaining patients, 65% (n = 56) had both a dual provider pre-transfer visit and a post-transfer visit.
The BACC YARD patients requested their next rheumatology visit (the first adult one) a median 119 days after their last pediatric visit, and the actual time until that visit was a median 141 days (P < .05). By comparison, the 45 patients in the historical control group had a median 261 days between their last pediatric visit and their first adult visit (P < .001). The median days between visits was shorter for those with JIA (129 days) and lupus (119 days) than for patients with other conditions (149 days).
Bridges acknowledged that the study was limited by the small size of the cohort and potential contextual factors related to individual patients’ circumstances.
“We’re continuing to make iterative changes to this process to try to continue to improve the transition and its outcomes in this cohort,” Bridges said.
Aimee Hersh, MD, an associate professor of pediatric rheumatology and division chief of pediatric rheumatology at the University of Utah School of Medicine and Primary Children’s Hospital, attended the presentation and noted that the University of Utah has a very similar transfer program.
“I think one of the challenges of that model, and our model, is that you have to have a very specific type of physician who is both [medical-pediatrics] trained and has a specific interest in transition,” Hersh told Medscape Medical News. That said, Hersh noted that the adult rheumatologist at her institution didn’t train in pediatric rheumatology but did complete a meds-peds residency. “So if you can find an adult rheumatologist who can do something similar, can see older adolescent patients and serve as that transition bridge, then I think it is feasible.”
For practices that don’t have the resources for this kind of program, Hersh recommended the Got Transition program, which provides transition guidance that can be applied to any adolescent population with chronic illness.
The other study, led by Kristiana Nasto, BS, a third-year medical student at Baylor College of Medicine, reported on the findings from one aspect of a program also developed to improve the transition from pediatric to adult care for rheumatology patients. It included periodic self-reported evaluation using the validated Adolescent Assessment of Preparation for Transition (ADAPT) survey. As the first step to better understanding the factors that can predict successful transition, the researchers surveyed returning patients with any rheumatologic diagnosis, aged 14 years and older, between July 2021 and November 2022.
Since the survey was automated through the electronic medical record, patients and their caregivers could respond during in-person or virtual visit check-in. The researchers calculated three composite scores out of 100 for self-management, prescription management, and transfer planning, using responses from the ADAPT survey. Among 462 patients who returned 670 surveys, 87% provided surveys that could be scored for at least one composite score. Most respondents were female (75%), White (69%), non-Hispanic (64%), English-speaking (90%), and aged 14-17 years (83%).
The overall average score for self-management from 401 respondents was 35. For prescription management, the average score was 59 from 288 respondents, and the average transfer planning score was 17 from 367 respondents. Self-management and transfer planning scores both improved with age (P = .0001). Self-management scores rose from an average of 20 at age 14 to an average of 64 at age 18 and older. Transfer planning scores increased from an average of 1 at age 14 to an average of 49 at age 18 and older. Prescription management scores remained high across all ages, from an average of 59 at age 14 to an average score of 66 at age 18 and older (P = .044). Although the scores did not statistically vary by age or race, Hispanic patients did score higher in self-management with an average of 44.5, compared with 31 among other patients (P = .0001).
Only 21% of patients completed two surveys, and 8.4% completed all three surveys. The average time between the first and second surveys was 4 months, during which there was no statistically significant change in self-management or prescription management scores, but transfer planning scores did increase from 14 to 21 (P = .008) among the 90 patients who completed those surveys.
The researchers concluded from their analysis that “participation in the transition pathway can rapidly improve transfer planning scores, [but] opportunities remain to improve readiness in all domains.” The researchers are in the process of developing Spanish-language surveys.
No external funding was noted for either study. Bridges, Hersh, and Nasto reported no relevant financial relationships.
Pediatric Rheumatology Symposium: Abstract 009. Presented April 1, 2023.
Pediatric Rheumatology Symposium: Abstract 084. Presented March 30, 2023.
Tara Haelle is a health/science journalist based in Dallas. Follow her at @tarahaelle
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