For millions of Americans who suffer from epilepsy, advanced monitoring is essential for diagnosis and effective treatment. But in New Jersey, access to these services is difficult for patients from racial and ethnic minority groups, according to research by Rutgers.
“Our data suggest that there are substantial inequalities in access to specialty epilepsy care in New Jersey, and these differences appear to be influenced by race, ethnicity, and type of insurance,” said said Brad K. Kamitaki, assistant professor of neurology at Rutgers Robert Wood. Johnson Medical School and lead author of the study, published in the journal Epilepsy and behavior.
To calculate how structural racism and insurance barriers might affect people’s ability to seek epilepsy care in the state, researchers analyzed epilepsy-related hospitalizations using databases of inpatients and emergency rooms between 2014 and 2016. They recorded 53,194 emergency room visits for epilepsy and 2,372 epilepsy surveillance units. (EMU) during this period.
Researchers sorted these cases by race, ethnicity and type of insurance to estimate and compare hospital admissions per capita and admission rates by number of emergency room visits for each group. This data was then used to calculate the use of EMU services in relation to the number of emergency room visits for each group. EMUs, where seizures can be observed with continuous video-EEG monitoring, are considered the “gold standard” for definitively diagnosing and locating epilepsy, Kamitaki said.
What the researchers found was that while black patients were admitted at high rates for all categories of insurance (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 emergencies. room visits for each group. This suggests that black patients tend to seek more emergency care for seizures, with relatively less access to specialist epilepsy services.
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 admitted to EMU at lower rates in each respective payer category.
Kamitaki said several factors could explain these disparities.
“Epilepsy care is very similar to diabetes care or high blood pressure care: patients have to follow up regularly, and it’s expensive,” he said. “Advanced epilepsy services are also considered elective, and for uninsured patients in particular, these costs put epilepsy treatment out of reach.”
Other factors include fewer New Jersey neurologists accepting Medicaid, inadequate transportation to and from clinics (people with epilepsy cannot legally drive for at least six months after a seizure), limited fluency in English and laws and policies that perpetuate inequitable access to health care for people of color.
But Kamitaki said his study cannot provide all the answers and more work is needed to fully understand why these inequalities exist.
We are not trying to provide definitive answers but rather to open doors. When trying to understand disparities, the first thing to do is simply point them out. In the past, most work on epilepsy has used general assumptions based on the entire US population. But there are also challenges that are unique to states, which is what we tried to measure.”
Brad K. Kamitaki, assistant professor of neurology at Rutgers Robert Wood Johnson Medical School
Kamitaki, BK, et al. (2022) Differences in elective epilepsy monitoring unit admission rates by race/ethnicity and primary payer in New Jersey. A review. Epilepsy and behavior. doi.org/10.1016/j.yebeh.2022.108923.