A Multicenter Assessment of Patient- and Provider-Reported Outcomes to Inform Healthcare Disparities in Epilepsy Care
Lilian Coelho1, Aya ElHassan1, Yashmi S. Sevak1, Maria A. Donahue1, Jeffrey Buchhalter1, William Trescher2, Jacob Pellinen3, Susan Herman4, Brandy Fureman5, Lidia MVR Moura1
1Neurology, Massachusetts General Hospital, 2Neurology, Penn State Hershey Medical Center, 3Neurology, University of Colorado, 4Neurology, Barrow Neurological Institute, 5Neurology, Epilepsy Foundation of America
Objective:
We aim to identify healthcare disparities in patients with epilepsy (PWE) using the Epilepsy Learning Healthcare System (ELHS) National Registry.
Background:
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.
Design/Methods:
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.
Results:
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.
Conclusions:
Through the ELHS National Registry data analysis, we were able to feasibly identify healthcare disparities among people with epilepsy.