Standardizing Care for Infantile Epileptic Spasms Syndrome Through a Specialized Infantile Epilepsy Center
Abstract number :
3.336
Submission category :
4. Clinical Epilepsy / 4C. Clinical Treatments
Year :
2024
Submission ID :
468
Source :
www.aesnet.org
Presentation date :
12/9/2024 12:00:00 AM
Published date :
Authors :
Presenting Author: Amy Patterson, MD – University of Tennessee Health Science Center, Le Bonheur Neuroscience Institute, Le Bonheur Children's Hospital
Connor Bronze, N/A – Rhodes College
Brittany Williams, DNP – University of Tennessee Health Science Center, Le Bonheur Neuroscience Institute, Le Bonheur Children's Hospital
Sarah Weatherspoon, MD – University of Tennessee Health Science Center
Marianna Rivas-Coppola, MD – University of Tennessee Health Science Center, Le Bonheur Neuroscience Institute, Le Bonheur Children's Hospital
Andrew Schroeder, MD – University of Tennessee Health Science Center, Le Bonheur Neuroscience Institute, Le Bonheur Children's Hospital
Rationale:
Infantile epileptic spasms syndrome (formerly infantile spasms) (IESS) is a rare age-related epileptic encephalopathy that most frequently presents in the first year of life. Earlier recognition and effective treatment lead to better prognosis, but the subtle nature of IESS can often contribute to delay in diagnosis and treatment. Standard treatments for IESS include hormonal therapy (HT: adrenocorticotropic hormone (ACTH) or prednisolone) and vigabatrin (VGB) with one study showing that dual therapy with HT and VGB is more effective than HT alone.1 A recent study identified inequities in treatment for IESS, specifically showing that non-Hispanic Black children and children with public insurance are more likely to receive non-standard therapies for IESS.2
We developed a specialized Infantile Epilepsy Center at Le Bonheur Children’s Hospital that includes rapid identification of high-risk referrals, timely assessment by a pediatric neurology provider, and a standardized diagnostic and treatment protocol preferentially using dual therapy to standardize care for children with IESS. The purpose of this study is to characterize the patient population in this center and review the types of treatment received by those patients.
Methods:
A retrospective chart review was performed using a database consisting of patients treated for IESS at the Infantile Epilepsy Center. Demographic information and treatment were analyzed.
Results:
We treated 200 patients with IESS from April 2017 to April 2024, with 43.5% being non-Hispanic Black. The majority of patients (71.5%) had public insurance; 27.5% had private insurance, and 1% were uninsured. At our center, 143 (71.5%) received dual therapy. All patients received a standard first-line treatment.
Conclusions:
Despite treating a significant population of non-Hispanic Black children and children with public insurance in our center, 100% received a standard first-line therapy for IESS, and 71.5% were treated with dual therapy.This study shows that using a standardized approach to diagnosis and treatment in a specialized Infantile Epilepsy Center contributes to more effective and equitable treatment of children with IESS.
References
1. O'Callaghan FJ, Edwards SW, Alber FD, et al. Safety and effectiveness of hormonal treatment versus hormonal treatment with vigabatrin for infantile spasms (ICISS): a randomised, multicentre, open-label trial. Lancet Neurol. 2017;16(1):33-42. doi:10.1016/S1474-4422(16)30294-0
2. Baumer FM, Mytinger JR, Neville K, et al. Inequities in Therapy for Infantile Spasms: A Call to Action. Ann Neurol. 2022;92(1):32-44. doi:10.1002/ana.26363.
Funding: NA
Clinical Epilepsy