Half of children with JIA enter adult care with worse disease activity, need better plan
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ORLANDO — As many as one-half of children with juvenile idiopathic arthritis enter adult care with increased disease activity, according to a speaker at the 2022 Rheumatology Nurses Society Conference.
Carolyn Zic, MSN, FNP-BC, of the Comer Children’s Hospital in Chicago, told attendees that this figure should rouse all providers to place greater importance on planning a more thorough transition from pediatric to adult care for their patients.
“Approximately one-half of children with JIA enter transition with increased disease activity,” she said. “Pediatric-onset rheumatic disease might be more severe than adult onset of disease, and this is often true with lupus, specifically.”
The transition from pediatric to adult care for rheumatic diseases is a shared responsibility and is key for good patient outcomes, according to Zic.
“Some models start transition tasks at age 12,” she said. “When you have a chronic illness that is going to be with you for your life, you need to know what you’re doing starting at the age of 12.”
Because the transition process is not complete even at the time a patient’s first adult visit, Zic recommended the process begin early to ensure the patient is as ready as possible for adult care. Additionally, the process must be a shared responsibility between the pediatric and adult care teams.
“Health care transition extends to the adult provider,” Zic said. “It’s a shared responsibility — it is not just ours, but yours as well.”
The model for caring for pediatric patients involves a family-centered focus and includes a lot of parental involvement, she added, whereas adult-centered care focuses on the individual and involves much more patient autonomy.
According to Zic, a successful transition into adult care should improve the patients’ ability to manage their own disease and health care. Additionally, the ideal process is defined as “an organized clinical process in both pediatric and adult practices to enable transition preparation, transfer of care and integration into an adult-centered care model,” Zic said.
The baseline toolkit for transition, as recommended by the American College of Rheumatology, is the “Got Transition” approach, she added. The toolkit includes six core elements to ensure patients successfully transition.
The pillars include the creation of a transition policy for the practice, transition tracking and monitoring, assessing transition readiness, integrating transition planning into adult practices, planning a successful transfer of care and initial adult visit, and establishing ongoing care. The planning guide for providers is available on the Got Transition website, Zic said.
“Pediatric to adult care transition is an essential part of managing patient care,” she said. “It is a shared responsibility between pediatrics and adult care providers to ensure a successful transfer and optimize patient care outcomes.”
Zic added, “Nurses can play an essential role in health care transition and more research is needed on the nursing role, especially in rheumatology.”
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Zic C. Preparing our juvenile patients for a successful transition into the adult world of care. Presented at: Rheumatology Nurses Society annual conference; August 3-6, 2022 (virtual meeting).
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