Health Disparities in Pediatric Epilepsy: Methods and Lessons Learned

Abstract

Epilepsy affects 1% of youth and is associated with neurocognitive and psychosocial comorbidities, increased risk of mortality, and poor health-related outcomes. Health disparities in children and youth with epilepsy (CYE) have been understudied. A Special Interest Group (SIG) within the Pediatric Epilepsy Research Consortium is conducting a scoping review to systematically assess the literature and highlight the gaps in access to clinical care and management of pediatric epilepsy. The methodology for this review is presented. In conducting a peer-reviewed assessment of the scope of health disparities in pediatric epilepsy, we learned that developing the methodology for and conducting a comprehensive scoping review with multiple contributors resulted in a time-intensive process. While there is an evidence to suggest that health disparities do exist in CYE, very few studies have focused on these disparities. Disparity results are often not included in key elements of articles, lending them to be underemphasized and underrecognized. Preliminary conclusions inform several important research considerations.

Delays to care in infantile epileptic spasms syndrome: Racial and ethnic inequities

“…Although inherent characteristics of a specialized center and regional differences affect the generalizability of these findings, our finding that delays in care exist for BIPOC individuals is in line with broader health disparities research. 21 Our study was a comprehensive single-center study where most patients are evaluated in the IESS program, which allowed us to eliminate the variability in provider practice inherent in multicenter studies.…”

“…The PERC Health Disparities group has emphasized the need for more research, advocacy, and programs to reduce racial/ethnic disparities in pediatric epilepsy 21 . Identifying delays in referral to a neurologist as a specific point at which racial/ethnic inequities occurred in our cohort allowed us the opportunity to create a targeted quality improvement initiative.…”

“…2 The PERC Health Disparities group has emphasized the need for more research, advocacy, and programs to reduce racial/ethnic disparities in pediatric epilepsy. 21 Identifying delays in referral to a neurologist as a specific point at which racial/ethnic inequities occurred in our cohort allowed us the opportunity to create a targeted quality improvement initiative. Culturally responsive education for first-line providers, decreased barriers to timely neurology care (creating urgent appointments slots for referrals where there is concern for infantile seizures), and improved communication between neurologists and providers for IESS are solutions that we have begun to implement.…”

“…In addition to quality improvement and advocacy, identification of root causes of inequities is needed. Racial/ethnic inequities are “produced and reproduced by laws, rules, and practices, sanctioned and even implemented by various levels of government, and embedded in the economic system as well as in cultural and societal norms.” 22 Structural racism has been used to describe this complex ecosystem and is a well‐recognized social determinant of health, resulting in worse outcomes in pediatrics, neurology, and epilepsy 8,21,23–26 . Determining precisely how structural racism impacts children with IESS will require further study and should integrally involve participation of affected families 12 .…”

“…22 Structural racism has been used to describe this complex ecosystem and is a well-recognized social determinant of health, resulting in worse outcomes in pediatrics, neurology, and epilepsy. 8,21,[23][24][25][26] Determining precisely how structural racism impacts children with IESS will require further study and should integrally involve participation of affected families. 12 Despite this being a single-centered study with full access to all records, we were unable to determine precise causes for delays in most patients.…”