Abstracts

This abstract is a recipient of the Nurse and Advanced Practice Provider Travel Award

Rationale: Children with severe epilepsies are living longer due to advanced therapies which require adult clinics be ready to provide care. Parents of children with epilepsy have identified that seizures and their co-morbidities are a major concern in their children living independently. Due to the complexity of Drug Resistant Epilepsy (DRE), a specialized transition clinic with comprehensive care is ideal. In 2016, the Children’s Hospital, London Health Sciences Centre (LHSC) initiated a Comprehensive Epilepsy Clinic (CEC) to provide advanced diagnostics, therapeutics, and resources in a clinic setting for children with DRE. This clinic includes; epileptologists, nursing, social work, dietitian, and a community educator. The purpose of this project was to establish a combined pediatric/adult transition program into the CEC to facilitate access for families of young adults with DRE.

Methods: In 2019, a quality improvement project was initiated to incorporate a transition program within the CEC. Stakeholders from the adult epilepsy team (LHSC), pediatric epilepsy team and transition services (Children’s Hospital) were identified. Information was gathered from literature and current transition programs. However, there was scarce evidence on transition care within severe epilepsies. Guidelines were created to identify young adults within the CEC who were >16 and refer them to our transition navigator for discussions on social and financial matters and to help foster an appropriate level of independence. They would then be seen within Transition/CEC by an adult epileptologist who would be introduced by their pediatric counterpart and assume care. The transition navigator would attend clinic to address any questions, connect to resources and provide transition readiness and quality of life questionnaires. The community epilepsy educator continues relationships with young adults through their lifespan. Education materials were created and uploaded onto the pediatric epilepsy program website.

Results: Prior to this Transition/CEC, there were no comprehensive transition clinics for young adults with severe epilepsies at Children’s Hospital, LHSC. Over the past 4 years, there have been a total of 9 transition/CEC’s with 41 young adults; 19 females and 22 males. The etiologies for the 41 patients are either structural (n=19), idiopathic (n=12) or genetic (n=10). Among this cohort, multiple comorbidities were identified which include intellectual disabilities or learning delays 53% (n= 21), Autism spectrum disorder 17% (n=7), mood or behavioral conditions 34% (n=14) and cerebral palsy 7% (n=3). Patients who have more than one comorbidity 29% (n=12)._x000D_
Conclusions: A combined Transition/CEC facilitates a continuous, comprehensive, and collaborative transition process in young adults with DRE. This model ensures access to necessary medical, social and financial resources and the ability to stay connected to their community. Further research is needed in order to streamline and safeguard healthcare transition for young adults with severe epilepsies due to the unique challenges of this chronic condition.

Funding: None