Abstracts

Rationale: Many caregivers of patients with genetic epilepsy report problematic transitions to adult care, often returning to pediatric providers and relying on emergency departments for care. Without consistent and appropriate medical supervision, epilepsy becomes more difficult to control. Uncontrolled epilepsy can lead to poor outcomes, including sudden unexplained death in epilepsy (SUDEP) and increased rates of behavioral and cognitive problems (Devinsky, 2014).Devinsky, O. (2014).  Transition to adult care for children with epilepsy--a call for action. Epilepsia, 3, 54-5.  Methods: The goal of the Genetic Epilepsy Transition Study (GETS) is to characterize the transition experiences and related recommendations of caregivers of teenage and adult patients with genetic epilepsy. We obtained an IRB exemption determination before seeking informed consent from 17 caregivers of teenagers and adults with Dravet syndrome (DS). A three-week, asynchronous, web-based focus group was conducted to ascertain participants' experiences with the transition process and brainstorm factors for success and failure. Data were analyzed and theories constructed using the Grounded Theory approach. Results: Participants described three distinct areas of transition:  clinical, community/education, and home/social support.  The success of any adult program was measured by how well it addressed the caregiver’s “greatest fear”: adequate care for their child when the caregiver is unable to care for them.  If a program does not provide the patient with the same level and quality of care as during childhood, the program is a failure. In the clinical setting, lack of provider knowledge of DS and comfort with adults with intellectual disabilities were identified as challenges across settings and specialties.  Several caregivers expressed that adult providers are often dismissive of their knowledge of DS. Uncontrolled seizures, severe and challenging behaviors, and cognitive functional level too high or low for program requirements are key limitations to successful transition to adult community programs in the DS population.  Barriers to access due to rural health disparities and threats to caregiver work/life balance are other areas of program weakness identified by participants.  Conclusions: Caregivers identified several activities that can improve adult programs: - Adult neurologists should understand the importance of genetic testing. - Early, comprehensive, and state-specific caregiver education on all available resources before teen years due to decades-long waiting lists for some programs. - Multidisciplinary transition teams. - Research on long-term outcomes. - Transition program evaluations based on participants’ definition of success. - Multilingual educational materials. Funding: Dravet Syndrome Foundation: $1045.00 to cover IRB fees