Multidisciplinary Intervention for Children With Epilepsy and Autism Spectrum Disorder Admitted for EEG: A New
Mary Wojnaroski1, Emily Newton2, Anup D Patel3
1Department of Psychology, Nationwide Children's Hospital, Columbus, OH.
Insights
A new multidisciplinary program successfully enabled children with autism spectrum disorder (ASD) and epilepsy to complete challenging hospital admissions for seizure evaluation. This intervention ensures equitable access to critical care for these vulnerable pediatric patients.
Area of Science:
- Pediatric Neurology
- Developmental Pediatrics
- Quality Improvement Science
Background:
- Intractable epilepsy affects one-third of children with epilepsy, necessitating Phase 1 hospital admissions for diagnostic evaluations.
- Children with epilepsy have an increased risk of autism spectrum disorder (ASD), complicating hospital admissions due to developmental delays and behavioral challenges.
- Challenging behaviors during admission can hinder seizure data collection and treatment planning.
Purpose of the Study:
- To implement and evaluate a novel, multidisciplinary intervention program for children with ASD and epilepsy undergoing Phase 1 admissions.
- To increase the participation rate of patients with ASD and epilepsy in a pre-admission treatment program from 0% to 80% within the first year.
Main Methods:
- A quality improvement (QI) methodology was employed to develop and implement the Phase 1 ASD and epilepsy intervention program.
- The program involved individualized admission planning, multidisciplinary team communication, and behavioral interventions tailored to each child's needs.
- Caregiver intake gathered crucial information on the child's development, preferences, and specific needs for admission.
Main Results:
- The program achieved a sustained centerline shift, with 83.9% (68/81) of enrolled children with ASD and epilepsy successfully completing Phase 1 admissions over five years.
- Participants ranged in age from 2 to 18 years (mean 10.7), with 70% male and 66.7% White.
- All participating children completed the multiple-day EEG and all required medical procedures without issue.
Conclusions:
- The developed multidisciplinary intervention program is feasible and has become standard care for children with ASD and epilepsy at the participating hospital.
- This program facilitates successful completion of challenging hospital admissions, ensuring equitable access to essential medical care.
- Similar interventions can be adapted for other hospital admissions or procedures for children with ASD.
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.
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