Rutgers study finds significant disparities in access to specialized epilepsy care in New Jersey

Rutgers study finds significant disparities in access to specialized epilepsy care in New Jersey

For millions of Americans suffering from epilepsy, advanced monitoring is essential for diagnosis and effective treatment. However, access to these services in New Jersey is difficult for patients from racial and ethnic minorities, according to a Rutgers study.

“Our data suggests that there are significant disparities in access to specialized epilepsy care in New Jersey, and these disparities appear to be influenced by race, ethnicity and insurance type,” said Brad K. Kamitaki, assistant professor of neurology at Rutgers Robert Wood Johnson Medical School and lead author of the study, published in the Epilepsy & Behavior magazine.

To calculate how structural racism and insurance barriers might impact people's ability to receive epilepsy care in the state, researchers analyzed epilepsy-related hospitalizations between 2014 and 2016 using inpatient and emergency room databases. They recorded 53,194 emergency department visits for epilepsy and 2,372 epilepsy monitoring unit (EWU) admissions during this period.

Researchers sorted these cases by race, ethnicity and insurance type to estimate and compare hospitalizations per capita and admission rates per number of emergency room visits for each group. These data were then used to calculate the use of EMU services relative to the number of emergency department visits for each group. EMUs, in which seizures can be observed with continuous video-EEG monitoring, are considered the "gold standard" for definitively diagnosing and localizing epilepsy, Kamitaki said.

The researchers found that while Black patients were admitted at high rates across all insurance categories (private and public) when measured on a per capita basis, Black patients with private insurance and Medicaid had the lowest EMU admission rates relative to the number of emergency room visits for each group. This suggests that black patients tend to use more emergency care for seizures, with relatively less access to specialized epilepsy services.

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Hispanics and Latinos and Asian and Pacific Islanders with private insurance, Hispanics and Latinos with Medicaid, and Asian and Pacific Islanders with Medicare were also enrolled at lower rates within each payer category.

Kamitaki said several factors could explain these differences.

“Treating epilepsy is very similar to treating diabetes or high blood pressure: patients need regular follow-up, and that is expensive,” he said. “Advanced epilepsy services are also considered elective, and particularly for uninsured patients, these costs make epilepsy treatment unaffordable.”

Other factors include fewer neurologists in New Jersey who accept Medicaid, inadequate transportation to and from clinics (people with epilepsy are not allowed to drive for at least six months after a seizure), limited English proficiency, and laws and policies that perpetuate unequal access to health care for people of color.

However, Kamitaki said his study cannot provide all the answers and that additional work is needed to fully understand why these disparities exist.

We don't want to give definitive answers, we want to open doors. When trying to understand differences, the first step is to simply point them out. Historically, most work on epilepsy has made general assumptions based on the entire U.S. population. But there are also country-specific challenges that we tried to measure.”

Brad K. Kamitaki, assistant professor of neurology at Rutgers Robert Wood Johnson Medical School

Source:

Rutgers University

Reference:

Kamitaki, B.K., et al. (2022) Differences in Elective Epilepsy Monitoring Unit Admission Rates by Race/Ethnicity and Primary Payer in New Jersey. A review. Epilepsy & Behavior. doi.org/10.1016/j.yebeh.2022.108923.

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