The IMPACT epilepsy Consortium: Exploring social drivers of health in epilepsy care to advance solution based initiatives

Rationale Social determinants of health (SDOH) are increasingly recognized as critical drivers of disparities in epilepsy care, yet systematic approaches to identifying and addressing social needs in clinical settings remain limited. The IMPACT Epilepsy Consortium conducted pilot surveys to characterize SDOH challenges faced by people with epilepsy (PwE) and the perspectives of clinicians who provide epilepsy care. Methods Two REDCap‑based digital surveys were distributed nationally: one to healthcare providers across epilepsy specialties and another to PwE and caregivers. Surveys assessed perceived social needs, barriers to care, screening practices, and lived experiences relevant to SDOH. Results A total of 113 epilepsy providers and 112 community respondents participated. Providers most commonly identified transportation limitations, rural residence, behavioral health needs, and financial instability as key barriers affecting epilepsy care. Screening for social needs was inconsistent. Community respondents reported substantial unmet needs, including food insecurity, housing instability, transportation challenges, and difficulties navigating healthcare systems. Nearly one‑third reported that providers never asked about social needs, and many described limited support in addressing barriers. Open‑ended responses highlighted five major content categories: access to care, transportation burden, loss of autonomy and social isolation, mental health challenges, and distrust or negative experiences with healthcare providers. Discussion Findings reveal misalignment between provider awareness of SDOH and consistent action to address them, underscoring the need for standardized screening, improved care coordination, and expanded community‑engaged strategies. The goal of the IMPACT Consortium is to develop pathways to reduce disparities and strengthen clinic‑to‑community support for PwE.

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Publication Details

Journal
Epilepsy & Behavior
Published
2026-06-18
DOI
https://doi.org/10.1016/j.yebeh.2026.111169
Primary Topic
Epilepsy research and treatment
Type
article
Field-Weighted Citation Impact
0.00
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article

The IMPACT epilepsy Consortium: Exploring social drivers of health in epilepsy care to advance solution based initiatives

Farah D. Lubin, Elizabeth A. Felton, Jonathan P. Williams, Temitayo Oyegbile‐Chidi et al.
Epilepsy & Behavior
Epilepsy research and treatment
article

The IMPACT epilepsy Consortium: Exploring social drivers of health in epilepsy care to advance solution based initiatives

Farah D. Lubin, Elizabeth A. Felton, Jonathan P. Williams, Temitayo Oyegbile‐Chidi, Elaine T Kiriakopoulos, Meredith E Olenec, Anny Reyes, Bruce P. Hermann
article en

Abstract

Rationale Social determinants of health (SDOH) are increasingly recognized as critical drivers of disparities in epilepsy care, yet systematic approaches to identifying and addressing social needs in clinical settings remain limited. The IMPACT Epilepsy Consortium conducted pilot surveys to characterize SDOH challenges faced by people with epilepsy (PwE) and the perspectives of clinicians who provide epilepsy care. Methods Two REDCap‑based digital surveys were distributed nationally: one to healthcare providers across epilepsy specialties and another to PwE and caregivers. Surveys assessed perceived social needs, barriers to care, screening practices, and lived experiences relevant to SDOH. Results A total of 113 epilepsy providers and 112 community respondents participated. Providers most commonly identified transportation limitations, rural residence, behavioral health needs, and financial instability as key barriers affecting epilepsy care. Screening for social needs was inconsistent. Community respondents reported substantial unmet needs, including food insecurity, housing instability, transportation challenges, and difficulties navigating healthcare systems. Nearly one‑third reported that providers never asked about social needs, and many described limited support in addressing barriers. Open‑ended responses highlighted five major content categories: access to care, transportation burden, loss of autonomy and social isolation, mental health challenges, and distrust or negative experiences with healthcare providers. Discussion Findings reveal misalignment between provider awareness of SDOH and consistent action to address them, underscoring the need for standardized screening, improved care coordination, and expanded community‑engaged strategies. The goal of the IMPACT Consortium is to develop pathways to reduce disparities and strengthen clinic‑to‑community support for PwE.

Epilepsy & BehaviorVol. 183
Dartmouth College (US), Dartmouth Institute for Health Policy and Clinical Practice (US), Cleveland Clinic (US), University of Wisconsin–Madison (US), Washington University in St. Louis (US), University of Alabama at Birmingham (US), The Neurological Institute (US), Dartmouth Health (US), University of California, Davis (US)
Openalex Percentile: Top 7%
Epilepsy research and treatment
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