Abstracts

Rationale: The burden of medically refractory epilepsy (MRE) has been well established in the pediatric population, and when combined with the co-morbidity of autism, the cost to the child and caregivers is inevitably higher. We retrospectively reviewed long-term functional outcomes after epilepsy surgery in patients with autism treated at our center, in order to elucidate any potential benefit with regard to the behavioral burden caused by these co-morbidities. This study focused on the perspective of the families and facilities that provide lifelong care to these patients.Methods: Parental reports of changes noted since surgery in the child’s overall functional status and behavior were collected from clinical follow up notes, annual assessments for patients residing in group homes and, where available, follow up questionnaires completed by the families. Functional categories listed in Table 1 were defined based on most frequently noted changes. Patient status in specific areas was interpreted as ‘better,’ ‘same,’ or ‘worse’ than before surgery. Statistical significance (p<.05) of functional changes was assessed with Fisher’s exact test. Seizure outcome was graded using Engel’s scale (Table 1). Fifty-six consecutive patients with autism who underwent resective, palliative or diagnostic epilepsy surgery between 2005 and 2014 were included in the review. Recent follow up and detailed behavioral outcomes were available for 49 of these patients (follow up 47±30 months, range 8-117 months).Results: According to caregiver’s reports, summarized in Table 1, a significant number of patients experienced gains in cognitive function after surgery (e.g. increased awareness, ability to pay attention and retain new information). Many patients also made progress in the development of language and other communication skills (e.g. eye contact, using gestures to communicate, better response to caregivers’ mood and facial expressions), and social behavior (e.g. more engagement with caregivers, ability to play cooperatively with a sibling, holding hands with children at school). Overall severity of all behavioral symptoms improved in the majority of patients, although some parents also reported negative behavioral changes (e.g. hyperactivity, impulsive behavior), and the sample sizes did not allow for valid statistical assessment of possible correlation between behavioral outcomes and the degree of seizure reduction. High parental satisfaction with outcomes of surgery was noted (Table 2).Conclusions: Our results highlight the potential for long-term cognitive and behavioral gains in epilepsy surgery patients with autism when seizures are better controlled. The changes were assessed by those providing daily care and support to the patients, and are therefore an informative and sensitive measure of the patients’ functional status. Collectively, these findings suggest that some behaviors previously attributed to autism may be associated with intractable epilepsy and surgical treatment of MRE in autistic children may lessen the behavioral burden of these co-morbidities.