Utilization of transition care management plans to facilitate transition of adolescents with epilepsy into the adult healthcare system

Abstract

Background: For adolescents with epilepsy, there is often a poor system in place to meet their individualized transition needs. Our objectives were 1) to develop epilepsy-specific transition care management plans (TCMPs) to ensure access, and attachment to adult healthcare providers, and 2) to identify strategies for providing support during the transition period, including through the development of physician and patient (or caregiver) navigated web-based tools, resources and recommendations for health system improvements. Methods: Physicians and nurses with expertise in areas including adult and pediatric epilepsy, family medicine, psychiatry, and varied allied health professionals were engaged to generate epilepsy-related TCMPs. Results: Through an iterative process spanning the course of over a year, TCMPs were developed to cover areas including: treatment responsive and resistant epilepsy, ketogenic diet, epilepsy surgery, women’s issues, mental health, and psychosocial aspects of epilepsy. The TCMPs referenced established guidelines and best practices in the literature wherever possible. Caregiver roles and responsibilities were outlined, remaining cognoscent of available provincial resources. Conclusions: Epilepsy specific TCMPs can be developed through a collaborative approach between pediatric and adult healthcare providers, easing the patient experience, creating educated accountability, and providing a forum to identify and address gaps of care in adolescents with epilepsy.