Pediatric to Adult Epilepsy Transition in Ambulatory Care: Benefits of a Multidisciplinary Epilepsy Transition Clinic

Abstract

Children with epilepsy comprise 3.2% of the estimated 500,000 youth with special medical needs who move from the pediatric to adult care model annually. These 16,000 children who require transfer each year represent a challenging subset of 470,000 youth living with epilepsy in the United States. Transition and transfer of care are complex and require gradual processes. This period for youth with epilepsy is often associated with inadequate follow-up and increased risk of nonadherence. Furthermore, youth and adults with epilepsy are known to have suboptimal social and emotional outcomes compared with peers, with high rates of under education, underemployment, poverty, and struggles with mental health. The goal of improving social determinants and continuity of care prompted the development of formal epilepsy transition clinics. Multiple clinic models exist, sharing the overarching goal of supporting youth while building self-management skills, tailored to age and developmental level. Early evidence shows that transition discussion leads to statistically significant increases in transfer readiness and self-efficacy in young adults with epilepsy. Our center boasts a 100% attendance rate at our transition and transfer clinic and 78% compliance with follow-up, further demonstrating that patients and families value quality transition programming.

Outcomes following a multi‐disciplinary pediatric‐to‐adult transition and transfer clinic at a level four epilepsy center

“…There was a statistically significant increase in timely follow‐up after our transition clinic (64% vs. 26%, p = .013). A potential contributor was the intentional scheduling of the first adult center appointment prior to discharge from transition clinic, which eliminated a recognized barrier to timely follow‐up 7,14,15 . We remain aware that the 64% rate of follow‐up within 6 months offers a valuable opportunity to identify patient‐specific barriers, as poor clinic attendance and no‐shows have been associated with increased hospitalizations and lost revenue 16–20 …”

“…This multidisciplinary clinic is staffed by pediatric epileptologists and advanced practice providers, neuropsychologists, a psychologist/developmental specialist, social workers, genetics counselors, pharmacists, and a liaison from Epilepsy Alliance of Ohio. The Epilepsy Transition Clinic uses the uncommon approach of embedding an adult provider within this already established children's hospital‐based epilepsy clinic 7 …”

“…Prior to discharge, Epilepsy Alliance contact is established and ongoing involvement with this community resource is encouraged. Scheduling of the first adult clinic follow‐up appointment is completed prior to clinic discharge 7 …”

“…Scheduling of the first adult clinic follow-up appointment is completed prior to clinic discharge. 7 To evaluate the immediate impact of the newly implemented clinic, a comprehensive electronic medical record retrospective chart review was performed on 56 consecutive epilepsy patients referred for transfer from NCH to OSU in 2019 and 2020. The decision to transfer care was made via shared decision-making by the patient, patient family and primary neurologist during their course of care, without involvement of the study team.…”

“…Potential impacts of poor transition prior to transfer include medication non‐adherence, increased emergency department visits, and higher susceptibility to status epilepticus and risk of being lost to follow‐up during this vulnerable time 1–3 . However, there is no clear evidence supporting the most effective approach to epilepsy transition and current research is largely incomplete due to the lack of well accepted and quantifiable outcome metrics 7 …”