Authors :
Presenting Author: Heidi Bender, PhD – Weill Cornell Medicine
Robert Beattey, J.D., Ph.D> – Fairfax Hospital; Gabrielle Meli, B.S. – University of Miami School of Medicine; Amanda Sacks-Zimmerman, Ph.D. – Weill Cornell Medicine; Kseniya Katsman, M.A. – Weill Cornell Medicine; Jessica Spat-Lemus, Ph.D. – Montclair State University
Rationale:
Persons of color and economically-disadvantaged individuals have markedly elevated risk in terms of incidence and prevalence of seizure disorders, with membership in these two groups conferring an increased likelihood of mortality due to Sudden Unexplained Death in Epilepsy; SUDEP. There is no clear consensus as to a single driver of increased risk of seizure-related disorders in these populations; rather, there appear to be multi-factorial barriers including: access to appropriate epilepsy care/resource scarcity, insurance limitations, reduced health literacy, stigma, historical mistrust of healthcare systems, and/or prior negative patient-provider relations. Outcomes for those impacted by the COVID-19 crisis demonstrate that social and racial factors are associated with disparate health outcomes, particularly, rates of ‘avoidable’ patient mortality and morbidity. Recent public health research highlights the differences in COVID-19 outcomes among historically marginalized groups, which can be similarly modeled and applied to better understand the unique and shared risk factors for SUDEP. Human Factors Analysis and Classification System (HFACS; Schappell & Wiegmann, 2000), a framework of causality, identifies common factors which result in adverse events or outcomes. We adapted a recent HFACS study examining the public health response to COVID-19 (HFACS-Public Health; Bickley & Torgler, 2021), to SUDEP, to identify specific factors within the structure, culture, governance and dynamics of the U.S. healthcare system that increase the likelihood of mortality in patients with epilepsy.
Methods:
A systematic review and critical appraisal was conducted to evaluate the racial/ethnic, sociocultural and socioeconomic disparities in SUDEP. The authors searched Medline and Cochrane Library for manuscripts in English that were published in the U.S. Heterogeneity between studies were examined through both subgroup and meta-regression analyses. Extracted factors (i.e., age, race, language, level of urbanization and education) were analyzed via the HFACS-PH framework.
Results:
In accordance with HFACS-PH structure, supported by evidence in the SUDEP literature, we identified potential areas of public-health system failures or elevated risks for patient mortality. Identified areas include: “unsafe acts” (i.e., poor decision making); preconditions for unsafe acts (i.e., social environment; personnel factors); unsafe supervision; organizational- (i.e., resource management/organizational climate); and external influences (i.e., sociopolitical context/ecological influences).
Conclusions:
Refining current conceptualizations of SUDEP through a public-health, socio-ecological lens is critical in establishing the causal pathways with potential for dire consequences in vulnerable populations with epilepsy. By increasing awareness of these hazards, we endeavor to proactively create supportive, preventative recommendations applicable to different levels within the health system, which highlights – and systematically dismantles – modifiable aspects of the patient care experience in historically under-represented, minoritized, under-served patients with epilepsy.
Funding: None