Abstract
Alcala-Zermeno JL, Fureman B, Grzeskowiak CL, Potnis O, Taveras M, Logan MW, Rybacki D, Friedman D, Lowenstein D, Kuzniecky R, French J. Epilepsia. 2024. https://doi.org/10.1111/epi.17961. Racial disparities affect multiple dimensions of epilepsy care including epilepsy surgery. This study aims to further explore these disparities by determining the utilization of invasive neuromodulation devices according to race and ethnicity in a multicenter study of patients living with focal drug-resistant epilepsy (DRE). We performed a post hoc analysis of the Human Epilepsy Project 2 (HEP2) data. HEP2 is a prospective study of patients living with focal DRE involving 10 sites distributed across the United States. There were no statistical differences in the racial distribution of the study population compared to the U.S. population using census data except for patients reporting more than one race. Of 154 patients enrolled in HEP2, 55 (36%) underwent invasive neuromodulation for DRE management at some point in the course of their epilepsy. Of those, 36 (71%) were patients who identified as White. Patients were significantly less likely to have a device if they identified solely as Black/African American than if they did not (odds ratio = 0.21, 95% confidence interval = 0.05-0.96, P = .03). Invasive neuromodulation for management of DRE is underutilized in the Black/African American population, indicating a new facet of racial disparities in epilepsy care.
Commentary
The well-established reality is that access to epilepsy care is not equitable for all. This disparity amplifies as we move from basic diagnostic care to advanced treatment options for refractory cases. Contrary to the misconception that high-income countries like the United States have equitable healthcare systems, several population health studies among Medicare beneficiaries have revealed significant disparities. These studies indicate delays in diagnosis for 40% of patients, 1 no prescription for antiseizure medications in 27% of those diagnosed, and early treatment discontinuation in 18% of the population. 2 Notably, race consistently emerges as a predictor of inequity across these studies.
The highlighted study examined the association between race and utilization of invasive neuromodulation devices in refractory epilepsy. Drawing from existing literature highlighting lower utilization rates of epilepsy surgery and vagus nerve stimulation (VNS) among African Americans, the researchers included 154 patients with drug-resistant epilepsy who were deemed ineligible for resective surgery in a prospective multicenter observational study (Human Epilepsy Project 2) cohort. Race and ethnicity served as the primary exposure while undergoing implantation with an invasive neuromodulation device as the response variable.
Upon establishing the generalizability of the study population's racial composition to 2020 U.S. census data, they found the odds of implanting a device were 79% lower in African Americans as compared with non-Hispanic White (NHW) patients, while differences between other minority groups and NHW were not statistically significant (OR = 0.96, 95% CI = 0.46-2.04, P = .9). To mitigate differences between groups, the study ensured baseline comparability in characteristics such as employment status, learning disability, level of education (high school diploma or less), age, and prior epilepsy surgery.
Despite the study's small sample size, the results are not surprising and corroborate existing literature. The study's primary limitation, however, lies in the absence of pertinent information, leaving the reasons for the racial discrepancy open to speculation. The existing literature theorizes low socioeconomic status, poor health literacy, and mistrust in the healthcare system to be possible explanations. 3 These become more relevant in the case of an implanted device. Device implantation carries not only higher surgical risks but also demands a deeper understanding of the technology and its benefits by the patient, along with substantial resources in electricity, home internet, familiarity with data downloading, and more frequent visits to the specialist. Moreover, the crude binary indicators of socioeconomic status used by the authors, namely employment status (employed or not) and high school education, may not fully capture the complexities. A preferable metric, such as the Area Deprivation Index, offers a more nuanced understanding by providing a weighted aggregate of 17 markers, including income, education, housing, and employment. This index ranks neighborhoods according to their level of socioeconomic disadvantage, thus helping to avoid confounding factors. 4 Additionally, factors like nonprivate insurance, uninsured or federally insured status among African Americans have been linked to lower likelihoods of surgical interventions.5,6 However, it's important to note that insurance or socioeconomic status and level of education do not always correlate with health literacy.
Persistent mistrust in the medical system, stemming from historical injustices like the Tuskegee experiments, further compounds these disparities. 7 Exaggerated perceptions of surgical treatment risks have been reported in the treatment of intractable epilepsy. 8 Simultaneously, physicians are not free of implicit bias which can affect the interventions offered and the patient's decision-making process. 9 However, whether the racially disparate outcomes in this study are driven by implicit/explicit physician bias or patients’ sentiments toward devices remains unclear, as the study fails to address whether patients were offered neuromodulation as part of their care.
Lastly, the study's lack of power to differentiate between devices is noteworthy, considering the differing levels of invasiveness and preimplantation testing requirements between VNS compared to an intracranial neuromodulation device.
In conclusion, racial inequities in healthcare utilization persist, warranting further research to address systemic shortcomings. Future interventions should prioritize health policy advocacy and leverage technology to identify and mitigate discrimination risks, ultimately simplifying healthcare delivery and ensuring affordability for all.
