Authors :
Presenting Author: Poojith Nuthalapati, MD – Massachusetts General Hospital, Harvard Medical School
Julianne Brooks, MPH – Department of Neurology – Massachusetts General Hospital, Harvard Medical School; Lilian Maria G. Coelho, MD – Department of Neurology – Massachusetts General Hospital, Harvard Medical School; Maria A. Donahue, MD – Department of Neurology – Massachusetts General Hospital, Harvard Medical School; Susan T. Herman, MD – Department of Neurology – Barrow Neurological Institute; Nicholas S. Abend, MD, MSCE – Division of Neurology – Children’s Hospital of Philadelphia; William H. Trescher, MD – Department of Pediatrics and Neurology – Penn State Health Children’s Hospital; Jeffrey Buchhalter, MD, PhD – Department of Pediatrics – Cumming School of Medicine, University of Calgary; Brandy Fureman, PhD – Mission Outcomes Team – Epilepsy Foundation; Sahar F. Zafar, MD, MSc – Department of Neurology – Massachusetts General Hospital, Harvard Medical School; Lidia M.V.R. Moura, MD, MPH, PhD – Department of Neurology – Massachusetts General Hospital, Harvard Medical School
Rationale:
Accurate, reliable, and clinically meaningful data is essential to track and improve the quality of care for people living with epilepsy (PWE). Seizure type classification, an American Academy of Neurology quality measure, is necessary to guide further research and to explore the effectiveness of treatment strategies guided by seizure type. Here, we report the results of the ILAE seizure Classification from a national epilepsy registry.
Methods:
We analyzed data collected as part of a national quality improvement initiative, the Epilepsy Learning Healthcare System (ELHS), from 2019-2023. Adult ELHS sites collected standardized seizure data using the ELHS Case Report Forms, which includes the ILAE Seizure Classification (2017). The data collected locally was then transferred to the ELHS Data Coordinating Center. We analyzed and stratified all provider-reported seizure types by race and ethnicity.
Results:
At five ELHS sites, providers documented ILAE seizure data of 2,503 PWE. We analyzed data from 2,434 PWE with reported epileptic seizures (mean age: 44.4; 55% females; 66% white; 80% not Hispanic/Latino). Epilepsy was classified as focal onset in 55% (1,331/2,434), generalized onset in 31% (759/2,434), combined focal and generalized in 8% (198/2,434) and unknown onset in 6% of PWE (143/2,434). Furthermore, 26.8% (715/2,434) had more than one seizure type. Upon further analysis (chi-square test), we found that seizure type varies by sex, with females having a lower proportion of focal seizures and a higher proportion of generalized and focal seizures and unknown onset seizures than males (X2=11.7, p=0.008). The most common seizure type was generalized tonic-clonic in 33% (792/2,434) PWE, followed by focal with impairment of consciousness in 31% (745/2,434) PWE.
Conclusions:
A standardized national ILAE classification reporting system is feasible in routine clinical settings as part of PWE care. Seizure-type reporting is crucial to standardize documentation, which will aid in identifying gaps in healthcare and improve health outcomes for PWE.
Funding:
The Epilepsy Learning Healthcare System is supported by grants from PCORI and the James M. Anderson Center for Health Systems Excellence (RI-PCC-2017 (sub: 03699), the CDC (1NU58DP006256-02-00), the National Association of Epilepsy Centers, Greenwich Biosciences, Eisai, and Sunovion. Although funded by the CDC, the contents of this publication are solely the responsibility of the Epilepsy Foundation and do not necessarily represent the views of the CDC.