Close the Gaps
I called to schedule an adult rheumatology appointment after my last pediatric visit, but they did not accept Medicaid. I did not know who to contact since I had been “discharged” from pediatric care, so I just hoped I would be fine without my lupus medication.
A spectrum of specific transition interventions have been trialed in AYAs with chronic diseases to avoid lapses in care, including transition coordinators, transition clinics and overlapping pediatric and adult visits. Identification of a transition coordinator has been most consistently identified as a key element of a successful transition program.14
Even though the roles and responsibilities of a transition coordinator can vary depending on local healthcare transition needs, their primary goal is to facilitate timely and safe transfer from pediatric to adult care. This often entails encouraging the AYA to practice self-management skills, navigating barriers to establishing adult care, orienting the AYA, and their family to differences between pediatric and adult care models and supporting the AYA both during and immediately following the transfer to adult care.
If the AYA misses their first adult rheumatology visit, the pediatric rheumatologist should be notified so that barriers to transfer of care can be reassessed.
Transition coordinators can also assist in management of a registry of transition-aged patients with chronic rheumatic disease, which is a challenging but vital component of a successful healthcare transition process. Patient registries should track transition readiness, barriers to successful transition and post-transfer outcomes, such as establishment of outpatient care with an adult rheumatologist and unplanned acute care visits.
By tracking metrics specifically tailored toward transition in a unified location, registries can proactively identify patients who need more dedicated resources to ensure a smooth transition. For example, a quick report could be run on a registry to obtain a list of patients older than 16 with public insurance, a history of poor healthcare engagement (i.e., multiple no-show visits) and high disease-related morbidity or mortality risk. A social work intervention could be triggered for these patients to address unmet social needs that lead to poorer transition outcomes.
For pediatric providers, the referral to an adult provider is an important step that needs to be approached purposefully. The expectation should be set for communication with the adult provider prior to and after their first visit. At minimum, a written medical summary should be sent with medical records, but in the case of patients with more complicated medical or psychosocial situations, more direct communication is needed. If possible, the AYA should have their own electronic or physical copy of their medical summary, which is common practice in other high-risk transfers of care, such as neonatal intensive care unit discharges.
Transfer completion should also be confirmed prior to refusing medication refills or further follow-up care.
