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Abstract Details

A Multicenter Assessment of Patient- and Provider-Reported Outcomes to Inform Healthcare Disparities in Epilepsy Care
Health Care Disparities
P6 - Poster Session 6 (5:30 PM-6:30 PM)
4-012
We aim to identify healthcare disparities in patients with epilepsy (PWE) using the Epilepsy Learning Healthcare System (ELHS) National Registry.
Affecting 3.4 million patients in the United States, epilepsy involves people of all ages, gender, races, and ethnicities, yet there remain disparities hindering the health of this population. The ELHS, a quality improvement network, was established to identify gaps in healthcare for PWE and may be a powerful tool to promote healthcare equity.

We conducted a retrospective analysis of data collected from fifteen sites (adult and pediatric) in the ELHS Registry (patient- and provider-reported) from January 2019 to October 2022. We classified the data based on the distribution of demographic measures (age, sex assigned at birth, race, ethnicity). Further, we created a subset of data on Seizure Freedom criteria (patients reporting the last seizure more than one year ago) to categorize among race and ethnicity and calculate proportions compared to the data registry. Additionally, we identified the frequency of each barrier to medication adherence as identified by the complete network population, considering there could be more than one barrier identified by one patient.
A total of 4,815 PWE from the registry were analyzed, with a mean and SD of the subject age as 45.57 years and 17.45 years, respectively; 30.8% (1483/4815) were female and 29% (1409/4815) were missing patients records of sex assigned at birth. Upon filtering the seizure freedom criteria from the whole registry, 1910 patients were observed, only 3.03% (58/1910) were African Americans, 1.51% (29/1910) were Asians, and 3.19% (61/1910) were Hispanics or Latinos. In addition to our initial observations, the most frequently identified barrier to medication adherence overall was “having trouble remembering” to take their anti-seizure medication.
Through the ELHS National Registry data analysis, we were able to feasibly identify healthcare disparities among people with epilepsy.
Authors/Disclosures
Lilian Maria Godeiro Coelho, MD
PRESENTER 		Dr. Godeiro Coelho has nothing to disclose.
Aya ElHassan (MGH) Aya ElHassan has nothing to disclose.
No disclosure on file
Maria Donahue (Massachusetts General Hospital) Maria Donahue has nothing to disclose.
Jeffrey R. Buchhalter, MD, FAAN (Buchhalter Consulting PLLC) Dr. Buchhalter has received personal compensation in the range of $50,000-$99,999 for serving as a Consultant for Epilepsy Foundation. Dr. Buchhalter has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Epilepsy Study Consortium. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Biocodex. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Dr. Buchhalter has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Biocodex. Dr. Buchhalter has received personal compensation in the range of $5,000-$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Neurona.
William H. Trescher, MD (Penn State Hershey Medical Center) Dr. Trescher has nothing to disclose.
Jacob Pellinen, MD (University of Colorado) The institution of Dr. Pellinen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for SK Life Science. The institution of Dr. Pellinen has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Jazz Pharmaceuticals.
Susan T. Herman, MD, FAAN (Barrow Neurological Institute) The institution of Dr. Herman has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Bioserenity. Dr. Herman has received personal compensation in the range of $500-$4,999 for serving as an officer or member of the Board of Directors for National Association of Epilepsy Centers. Dr. Herman has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Current Treatment Options in Neurology. Dr. Herman has received personal compensation in the range of $0-$499 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Journal of Clinical Neurophysiology. The institution of Dr. Herman has received research support from Epilepsy Foundation; Epilepsy Learning Healthcare System. The institution of Dr. Herman has received research support from CREMedical. The institution of Dr. Herman has received research support from NIH/NINDS. The institution of Dr. Herman has received research support from Marinus. The institution of Dr. Herman has received research support from Neuroelectrics, Inc. Dr. Herman has received personal compensation in the range of $500-$4,999 for serving as a Medical Director, Neurodiagnostics Program with Laboure College. Dr. Herman has a non-compensated relationship as a Professional Advisory Board member with Epilepsy Foundation that is relevant to AAN interests or activities.
Brandy Fureman, PhD Dr. Fureman has received personal compensation for serving as an employee of Epilepsy Foundation. Dr. Fureman has or had stock in EnlitenAI. The institution of Dr. Fureman has received research support from Jazz Pharmaceuticals, Inc. The institution of Dr. Fureman has received research support from NINDS/NIH. The institution of Dr. Fureman has received research support from CDC. Dr. Fureman has a non-compensated relationship as a Owner with Neuroscience Navigators, LLC that is relevant to AAN interests or activities.
Lidia Maria V. Moura, MD, PhD, MPH, FAAN (Massachusetts General Hospital) Dr. Moura has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Moura has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Pfizer. The institution of Dr. Moura has received research support from Centers for Diseases Control and Prevention (CDC SIP20-007) . The institution of Dr. Moura has received research support from Epilepsy Foundation of America . The institution of Dr. Moura has received research support from NIH - NIA and NINDS. Dr. Moura has received personal compensation in the range of $50,000-$99,999 for serving as a Expert Advisor with Epilepsy Foundation .