Abstracts

Rationale: A significant proportion of adolescents with childhood-onset epilepsy need ongoing long-term care as adults requiring transition and transfer of care from the pediatric to the adult epilepsy care setting. We aimed to describe perspectives of transition and transferring patients with childhood-onset epilepsy from pediatric to adult care from the viewpoints of both pediatric and adult epileptologists. Methods: Telephone interviews with pediatric (n=15) and adult (n=11) epileptologists at leading U.S. epilepsy centers were conducted by the senior author. In order to capture a range of responses, a semi-structured interview guide addressing the preparation and move of patients from pediatric to adult epilepsy care was developed and utilized. Open-ended questions, in addition to directed and non-directed prompts were used to encourage further discussion. Interviews were audio-recorded, transcribed, and systematically coded using thematic analysis by two independent coders, and subsequently checked for agreement during regular meetings. Results: Participants were on average 46 years old (SD=7.4), 50% male, 91% Non-Hispanic and 85% Caucasian; all had completed a formal epilepsy or clinical neurophysiology fellowship (mean 11 years since terminal training; range 1.5-23 years) and were employed at a comprehensive epilepsy center. Four themes regarding epileptologists’ perspectives of epilepsy transition and transfer of care were evident: (1) diverse descriptions of transition and transfer included different approaches in practice about the time and the permanent nature (or not) of the process; it is (2) an unnatural and emotionally difficult, in addition to (3) dynamic and time-consuming shift for all stakeholders, and (4) clinicians’ attempts to make the best of the challenge include looking for better options. Conclusions: The variability of physicians’ perspectives about the transition and transfer of patients with epilepsy from pediatric to adult health care settings highlight a need to clarify a shared language and develop more transparent and effective models of care with collaboration from all stakeholders.  Funding: American Epilepsy Society/EpilepsyFoundation