Reveals barriers in epilepsy care related to social needs, suggesting a need for improved patient support.
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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Reyes et al. (2026) studied this question.
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