Abstracts

Rationale: Children who continue to have seizures after two or more antiepileptic medications at maximal therapeutic doses are diagnosed with refractory epilepsy and an inpatient epilepsy surgery evaluation should be considered. At our hospital, this evaluation includes LTM, PET scan, and MRI, and possibly a SPECT scan and fMRI. The goal of testing is to collect comprehensive data to determine if the child is a candidate for epilepsy surgery and if so, which surgical procedure should be recommended. Notably, individuals with neurodevelopmental disabilities have higher rates of epilepsy compared to peers (Heller et al., 1996). Studies have shown that 20-33% of individuals with autism spectrum disorder (ASD) develop epilepsy. Children with ASD and refractory epilepsy can benefit from epilepsy surgery (Morrison-Levy et al., 2018). However, the needs of children with ASD can present unique challenges to procedures during an epilepsy surgery evaluation (Kokozka et al., 2017). Fortunately, Paasch et al. (2012) noted that clients with neurodevelopmental disabilities can be successful with LTM with strategies such as preparation and desensitization. Additionally, EMU (Epilepsy Monitoring Unit) providers may benefit from trainings specific to children with ASD. Further research is needed to identify specific areas of intervention for children with ASD referred for LTM and needed trainings for EMU providers. Methods: The Epilepsy Center at our hospital is a level four epilepsy program, and provides interdisciplinary care for children. During the current project, parents and health care providers were interviewed about previous experiences with epilepsy surgery evaluation and potential challenges for children with ASD. Based on initial responses, standardized interviews are being conducted with parents, referring providers, and inpatient medical providers. Results: At our hospital, from 2016-2018, 33% of patients who were admitted for epilepsy surgery evaluation were diagnosed with ASD, consistent with epidemiological data. Based on parent and provider responses, the following themes were identified as challenges for children with ASD during surgery evaluation: autism symptoms and problem behaviors (developmental delays, sensory sensitivities), specific medical procedures, parent/child expectations and preparation for admission, and inpatient providers’ training experience and knowledge of patient’s needs prior to admission. Regarding the epilepsy surgery evaluation, identified challenges included EEG placement, refraining from touching EEG electrodes for an extended time period, and remaining in the room to allow for video of seizures. Parents reported concern about their child’s ability to tolerate inpatient admission, uncertainty about actual procedures, or ways to prepare their child for admission. Providers identified limited time for certain procedures and limited information about each child’s unique needs prior to admission. Conclusions: Clearly, some children with autism can benefit from epilepsy surgery, but can present with unique challenges that can complicate collection of data necessary to inform surgery. Results from interviews will be used to inform a quality improvement project to support and prepare children with ASD and their families for inpatient epilepsy surgery evaluation and encourage providers to refer patients with ASD and epilepsy for surgery evaluation. Data indicates greatest point of intervention may be preparation prior to the admission to identify and problem solve challenges for each individual child. Funding: No funding