Multidisciplinary Intervention for Children With Epilepsy and Autism Spectrum Disorder Admitted for EEG: A New Standard of Care.

Abstract

Background and objectives: Approximately one-third of children with epilepsy develop intractable epilepsy and require multiple-day hospital admission for EEG and neuroimaging to determine other interventions for seizure reduction (Phase 1). Of note, children with epilepsy are at increased risk of autism spectrum disorder (ASD); however, prolonged hospitalization may be difficult due to developmental delays, sensory sensitivities, and challenging behavior. Challenging behavior during or reluctance to complete admission may lead to delayed or incomplete information about seizures and interfere with treatment. To address this need, we created a multidisciplinary team and a novel program, the Phase 1 ASD and epilepsy intervention program. We used quality improvement (QI) methodology, and our aim was to increase the percentage of patients with ASD and epilepsy who participated in a treatment program before Phase 1 admission from 0% to 80% in the first year.

Methods: Participants included children with ASD and epilepsy who were referred for Phase 1 at a large children's hospital with a level 4 epilepsy center. After referral, caregivers were called to complete an intake and gather information about the child's development, preferences, and needs for admission. The program includes individualized planning for admission based on the child's needs, team communication about patient characteristics and needs, and behavior intervention. The intervention was implemented and monitored using QI methodology.

Results: All children with ASD referred for Phase 1 were enrolled in the program, and we achieved a centerline shift in the first 2 years, which has been sustained for 5 years (68 of 81 participants, 83.9%). The age of patients ranged from 2 to 18, with a mean age of 10.7 years. Seventy percent were male, and 66.7% were White. All children who participated completed the multiple-day EEG and all required medical procedures.

Discussion: Our work demonstrates the feasibility of the program, which is now standard of care at our hospital. Similar interventions can be implemented for Phase 2 admissions or other medical procedures. Children with ASD who participate in a multidisciplinary intervention program can successfully complete potentially challenging hospital admissions, allowing them equitable access to critical care.