New Kits Address Pediatric-to-Adult-Care Transition

Toolkit Elements
To help ease the pediatric-to-adult care transition, the Initiative decided to create a specialized toolkit with at least three elements. Among them was a transition-readiness assessment tool for the pediatric team, a medical summary and transfer record to standardize communication between the pediatric and adult teams, and a self-care assessment for the patient to complete so the adult team could assess gaps in their knowledge and address those issues going forward.

“This is an odd time to transition patients,” says Brian Oppermann, MD, of the Department of

Brian Oppermann, MD, of the Department of Rheumatology at the Geisinger Health System in State College, Pa.

Rheumatology at the Geisinger Health System in State College, Pa. “These patients are not only transitioning from pediatric practices to adult practices that function differently, but they may also be moving across or out of state for college, [which] poses other new challenges.”

This means challenges in the way people are treated may arise, not the least of which is reduced parental involvement in medical decision making.

A Multi-Faceted Developmental Process
The process to come up with these toolkits was multi-faceted. The ACR Transition Work Group looked at the results of a previously published study of members of the Childhood Arthritis and Rheumatology Research Association. Practitioners were asked about what they felt was needed regarding standardized tools and what areas they felt least comfortable with during the transition process.¹

To obtain input from adult practitioners, the committee used the results of a previously completed survey of members of the ACR. Both groups indicated a need for standardized transition tools in rheumatology.²

The work was overseen by a task force that was diverse geographically and in the practice setting, and included both pediatric and adult practitioners. The task force also included patients and parents. Working over a roughly nine-month period, the group reviewed existing literature and available tools, developing some tools of their own as needed.

Focused on JIA & Lupus
“It was the decision of the ACR Transition Work Group to focus on juvenile idiopathic arthritis [JIA] and lupus,” says Dr. Ardoin. “JIA is the most common pediatric diagnosis in pediatric rheumatology, and over half of JIA patients require continued treatment for arthritis in adulthood. In addition, there are some important differences in the treatment between JIA and adult arthritis about which adult practitioners should be aware.”

Lupus was chosen because it tends to be very severe, and patients will have the disease into adulthood. It is also one of the more complex diseases for which gaps in treatment can increase the likelihood of bad outcomes.