Health Disparities and Inequities in Pediatric Epilepsy
Abstract number :
Submission category :
17. Public Health
Submission ID :
Presentation date :
12/5/2021 12:00:00 PM
Published date :
Nov 22, 2021, 06:52 AM
Karen Skjei, MD - University of Texas at Austin, Dell Medical School; Erin Fedak Romanowski, DO - University of Michigan; Rebecca Garcia Sosa, MD - Northwestern/Lurie Children’s Hospital of Chicago; Charuta Joshi, MD - Children's Hospital of Colorado; Gogi Kumar, MD - Dayton Children’s Hospital; B. Oyinkan Marquis, MD - Weill Cornell School of Medicine; Michelle Park - Oregon Health and Science University; Eva Patel - University of Texas at Austin; Kavya Rao, MD - Stanford University; Janelle Wagner, PhD - Medical University of South Carolina
Rationale: Nearly half a million US children suffer from epilepsy, often with debilitating seizures resulting in injury, hospitalization and death. Significant disparities in health and healthcare have been shown to affect people of color, people lacking private health insurance, those with socioeconomic disadvantages and those with limited-English-proficiency. Few studies have examined health disparities in youth with epilepsy (YWE). The aim of this project was to respond to an NIH “request for information” on health disparities and inequities in neurology, focusing on pediatric epilepsy.
Methods: The Pediatric Epilepsy Research Consortium (PERC) is a group of 54 US pediatric epilepsy programs that facilitates practice changing research to improve the care of YWE. PERC formed a 9-member Health Equity Special Interest Group (SIG) to develop research projects examining disparities in care for YWE. The SIG responded to a “request for information” (RFI-NOT-NS-20-026) from NINDS soliciting input on areas of health disparities and inequities in neurological disease. Multiple PubMed and Google Scholar searches were performed utilizing a broad range of search terms and references of relevant studies were mined looking for publications addressing or reporting health disparities and/or inequities in pediatric epilepsy. Abstracts from previous AES meetings were also searched. Findings were categorized by disparity factor (race/ethnicity, SES/insurance, gender, education, geography, and nativity/language) into 4 domains: prevalence, access to care, management, and outcomes. Both positive and negative findings were considered.
Results: Very few studies were found directly addressing health disparities in epilepsy in the US (5 pediatric, 18 adult or mixed pediatric/adult). Most results came from studies with other aims that incidentally reported disparities in socio-demographic data. Findings include an increased risk of epilepsy, decreased likelihood of seizure remission, lower rate of epilepsy surgery and higher rate of SUDEP (sudden unexplained death in epilepsy) among YWE of color. Similarly, YWE with public insurance and/or from low-income families have an increased risk of epilepsy, reduced access to epilepsy care, less favorable epilepsy management and worse quality of life (QoL). There was no data regarding the effect of parental limited English proficiency or nativity status on pediatric epilepsy outcomes. We are currently conducting a scoping literature review to further identify gaps in knowledge regarding health disparities and inequities in pediatric epilepsy, and methods for this scoping review will be presented as “Next Steps.”
Conclusions: Health disparities and health care inequities in YWE have been highlighted, and a scoping review will provide further insight into the current gaps. Identifying and addressing these gaps (e.g., few pediatric studies examining long term outcomes for YWE and very little information on gender and English proficiency) will promote increased equity in care and enhanced clinical outcomes for all YWE.
Funding: Please list any funding that was received in support of this abstract.: None.