The transition from pediatric to adult care can be a rocky one. For many rheumatology patients, any problems in the move can cause gaps in care. To address this issue, the ACR joined the American College of Physicians’ (ACP) Pediatric to Adult Care Transitions Initiative.
The Initiative is a project spearheaded by the ACP’s Council of Subspecialty Societies, in collaboration with the Got Transition (GT)/Center for Health Care Transition Improvement, the Maternal and Child Health Bureau, the National Alliance to Advance Adolescent Health, the Society of General Internal Medicine and the Society of Adolescent Health and Medicine.
As part of the Initiative, the ACP asked various subspecialties to develop toolkits specific to their needs. The ACR responded to that request by forming the ACR Transition Work Group. ACR and ARHP members with experience in adult and/or pediatric rheumatology met to work out what was needed to be included in the kits.
“There is a robust amount of literature suggesting that we don’t do a particularly good job of preparing young adults with complex medical conditions to enter the adult medical sphere,” says Stacy P. Ardoin, MD, MHS, associate professor of clinical medicine at The Ohio State University and Nationwide Children’s Hospital in Columbus and chair of the ACR’s Special Committee on Pediatric Rheumatology. Dr. Ardoin led the ACR Transition Work Group. “Studies across many specialties, including rheumatology, show that less than half of the time, these families get the information they need to successfully complete the transition.”
Size of the Problem
Of the roughly 18 million people the ACP calls “emerging adults,” about one in four has a chronic medical condition, and in many cases, they don’t understand the nature of their conditions, which can result in poor adherence or gaps in care. If this happens, unnecessary complications may have occurred by the time they reestablish contact with their new rheumatologist.
“One of the things about the Initiative that is especially unique is that it [originated] from the adult side,” said Dr. Ardoin. “In the past, efforts to focus on the transition process improvements had been primarily initiated from the pediatric side.”
Overall, the Initiative strived to put in place an evidence-based model with six core elements. These included suggested transition policies, tracking and monitoring of the patient through the process, assessing patient readiness for the change, planning and transfer of care and completion of the hand-off.
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.