Abstracts

Rationale: Transition from pediatric to adult epilepsy care is challenging, and an unsuccessful transition can have detrimental effects on the patient’s future. Approximately 50% of those with epilepsy in childhood will need treatment in adulthood. However, many individuals with chronic illness in late adolescence are lost to follow-up, and those with epilepsy are at risk for missed clinic appointments, increased seizures, and poor AED-adherence. Barriers cited for transitions include anxiety, financial issues, lack of an identified staff person to coordinate, and lack of tools for assessing transition readiness. Researchers emphasize the importance of addressing these barriers in a multidisciplinary setting. Methods: The transition-age program (TAP) facilitates transition from pediatric to adult epilepsy care at the Minnesota Epilepsy Group. Currently, TAP evaluates participants with epilepsy between ages 17-22 whose pediatric neurologist intends to transfer in 6-12 months. The pre-transition TAP visit involves meeting with neuropsychology, psychology, and social work to (1) assess competence to manage epilepsy independently through the use of a transition readiness questionnaire, (2) identify patients with comorbid psychosocial issues that may interfere with transition, and (3) provide education, set goals, and offer recommendations  for the patient and caregivers. The appointment takes 2-3 hours and involves the participant and caregivers meeting with a clinician of each discipline separately. The multidisciplinary group then meets with the family at the end of the visit to discuss findings, goals, and recommendations. The family and physician receive a written summary.After this visit, the patient has a final visit with the pediatric neurologist, at which time he/she meets the adult neurologist who has been identified as a good fit. The post-transition TAP visit occurs with the psychosocial TAP team after the patient’s initial appointment with the adult neurologist, to follow-up with previous goals/recommendations. Results: TAP is currently in its pilot phase. Since the implementation of TAP in May 2016, 7 participants (ages 17-21) have completed their pre-transition TAP visit. Of the 7, 3 were referred for psychotherapy due to mood or behavioral concerns. 5 required recommendations regarding medication adherence, increasing independent living skills, or managing self-care responsibilities. Half of the participants are awaiting the final visit with pediatric epileptologist, and half are awaiting the first visit with the adult epileptologist. Conclusions: The early stage of TAP has shown success in identifying individuals with epilepsy who have co-occurring psychosocial issues (e.g., psychological comorbidities and adherence/self-care concerns) that could interfere with a smooth transition between pediatric and adult epilepsy care. The transition-readiness assessment facilitated education and discussion regarding appropriate next steps toward readiness. This study is ongoing, and an expected 11 participants will be added by AES. Funding: none