Children with drug-resistant epilepsy who are Black or insured through Medicaid may be less likely than white and privately insured patients to receive surgical treatments that can end or minimize their seizures and extend their lives, according to new research being presented Monday at the American Epilepsy Society’s annual meeting in Orlando, Fla.
The study of 18,000 children who were treated at 49 pediatric hospitals in the U.S. between 2004 and 2020 found that those who had cranial surgery, which involves removing or disconnecting the brain portion where seizures occur, were 83% more likely to be alive after 10 years. Children who received vagus nerve stimulation, or VNS, which involves implanting a device under the skin of the chest or neck to send electrical impulses to the brain, were 35% more likely to be alive. All of the patients were taking anti-seizure medications, because the drugs help to reduce their occurrence, even if they don’t end seizures entirely.
But the surgeries were not received equally. While 57.8% of the children in the study were white and 14.6% were Black, 63.6% of those receiving cranial surgery were white and 10.1% were Black. Of those receiving VNS implants, 66.5% were white and 9.6% were Black.
Children who had private insurance, even though they made up less than 40% of the study, accounted for nearly 50% of those receiving cranial surgery, while children insured by Medicaid, who made up more than half of those in the study, accounted for just 40% of those receiving surgery.
Black and publicly insured patients were more likely to be treated only with anti-seizure medication and to have shorter life spans than white children, said Sandi Lam, lead author of the study and division chief of pediatric neurosurgery at Lurie Children’s Hospital. Hispanic children also didn’t appear to live as long. Much of the new analysis is based on a study published earlier this year in Lancet.
“When you look at who is getting these treatments, it’s very different,” Lam told STAT. “It really isn’t fair.” Children with epilepsy face a higher mortality rate due to sudden death, accidents during seizures, or suicide.
Several studies indicate incidence of epilepsy is higher in Black populations and in those with less education and household income and that Black people are more likely to experience epilepsy-related health emergencies. Lam said it was well known that racial and ethnic disparities exist in epilepsy care — for example Black and Hispanic patients are also less likely to get newer anti-seizure medications — but said not enough was being done to get better care to all patients; she hoped the new findings would help prompt more people who provide epilepsy care to push for solutions.
Of the nation’s 3.4 million people with epilepsy, nearly half a million are children. Thirty percent of those children, said Lam, have drug-resistant epilepsy and could likely benefit from surgical procedures. Those surgeries are not as widely used as they could be despite being shown to cure or limit seizures; between 3,000 to 4,000 adult and pediatric patients of all races receive surgeries per year when more than 100,000 could be candidates for surgery, she said.
The reasons fewer Black and Hispanic and publicly insured patients receive surgical care for epilepsy are multifactorial, she said. For many, it’s a delay in diagnosis: Access to specialty care can be difficult. But even those who get to specialists face hurdles. Patients need to get a series of tests and often expensive and time-consuming brain scans to determine if they are a good candidate for surgery and which procedure would be best. “All of these take coordination, scheduling, and appointments,” said Lam.
“A lot of people say access and they think insurance, but it’s also what a family has to give up to get a child to the doctor. They may have to take the day off or sleep at the hospital.” Lam’s previous research has shown that 1 in 4 families with children with epilepsy have to cut back work hours or quit working. “There’s quite a large caregiver burden,” she said.
“To me it’s disheartening,” Kevin Chapman, a pediatric neurologist at Phoenix Children’s Hospital and a board member of the American Epilepsy Society, said of the new study. “These patients are so vulnerable.”
Patients with epilepsy face multiple risks, from slowed cognitive development to cerebral palsy. Children who receive epilepsy surgery at younger ages have much better outcomes, Chapman and Lam said, because the young brain can recover and continue to develop.
Chapman said insurance access was one issue, but said surgeons could do a better job interacting with patients and also with the physicians those patients trust — for example, primary care physicians in the Indian Health Service who may refer patients to his advanced epilepsy center. Surgeons could take more time in visits to explain issues and answer questions and to make sure they are being understood clearly, he said.
“We all say, ‘I treat white patients the same as Native American or Black patients,’ but maybe that’s not correct. Maybe we need a different approach for different patients,” he said.
“In my own practice, I see people who are reluctant to have surgery because of a mistrust of the system and rightfully so,” said Chapman, who is white. “What techniques can I use to help them understand that by not doing this surgery they may be putting their child at risk, and how can I do so in a culturally sensitive manner?”
The findings in epilepsy highlight broader racial disparities that need to be addressed, said De-Shaine Murray, a postdoctoral fellow at Yale’s Wu Tsai Institute who is working on creating devices to monitor brain injury. In 2020, he co-founded the group Black in Neuro to help diversify neuroscience. “This is not just an epilepsy phenomenon,” he said. “You see these disparities across neurological diseases and also in dementia and stroke — really any disease related to environment and stress.”