Creating a Sustainable Model for Epilepsy Transition with Objective Outcome Measurements
Elizabeth Edwards1, Kathryn Lalor2, Quynh Vo3
1University of South Alabama College of Medicine, 2Division of Pediatric Neurology, 3Department of Neurology, University of Alabama at Birmingham
Objective:

We have created a dedicated epilepsy transition program with pediatric and adult epileptologists to facilitate the transfer of adolescent patients from pediatric to adult management and support their budding independence.

Background:

Approximately 33-50% of children with epilepsy will require continued management of their seizures into adulthood1,2. Transition from pediatric to adult epilepsy represents a challenging time for young patients. Problems can arise including disengagement, poor compliance, increased comorbidities and mortality, and cognitive and behavioral issues1,3–5. A transition program may alleviate some of these concerns3,4,6–11. Different from transfer-of-care, transition-of-care is a process preparing patients and their families for a change in their care3,6,8,9,12–14

Design/Methods:

Working with billing experts, administration, IT, and clinicians we created two sustainable epilepsy clinic models in April 2021: the Transition Clinic (TC) and the multidisciplinary Staging Transition for Every Patient (STEP) program. We created an algorithm with point of contact to streamline referrals from pediatric to adult epilepsy clinics. Patients through the TC receive epilepsy care and guidance to medical independence with dual pediatric and adult inputs. TC patients have EpiTRAQ scores tracked at subsequent visits.

Results:
Since their launch, 75 new patients were seen through the TC and 46 through STEP with 63 direct referrals from UAB Children’s. No patients were lost to follow up. All TC patients showed improvement of EpiTAQ scores with each visit
Conclusions:

We set about to first create a smooth transfer of care and transition into adult epilepsy for adolescents. There is a cited call in the literature for a transition program to report objective outcomes, which is the next step of this project. Feedback from referred providers and patients will be evaluated. Primary and secondary outcomes will be compared to age matched controls to determine whether our program has improved transition readiness for patients transferring to adult epilepsy care and independent epilepsy management.

10.1212/WNL.0000000000202926