How an Epilepsy Network in Canada Streamlined Referrals to Surgery
By Thomas R. Collins
June 22, 2017
ARTICLE IN BRIEF
A model program in Canada, the Ontario Epilepsy Care Network, aims to streamline the process for appropriate referrals to surgery for epilepsy patients.
BOSTON—When epilepsy care providers in Ontario took a deep look at the province's care for the disease, their main goal was to show the government why it was a good idea for it to continue paying for magnetoencephalography for surgical candidates.
The comprehensive retrospective review also generated a statistic that was highly discouraging, although maybe not shocking: Only about 2 percent of epilepsy patients in Ontario who seemed to be eligible for surgery were actually getting the procedure.
In response, Ontario has developed a model with district epilepsy centers, surgical centers, and standardized guidelines for treatment that could offer lessons to the United States and to other countries seeking to improve epilepsy care, said O. Carter Snead III, MD, FAAN, head of the neurology division at the Hospital for Sick Children in Toronto, in a plenary talk here at the AAN Annual Meeting in April.
The goal of the Ontario Epilepsy Care Network is to steer epilepsy patients to the right place so that they get quality care in a timely fashion. Dr. Snead said a common scenario in Ontario in 2011 was that a person would have a seizure, go to the emergency room where doctors may or may not have known what to do, and then be sent home where they would have another seizure and perhaps be started on a medication.
“If seizures continued, these patients wandered in the wilderness for years,” Dr. Snead said. “And this dismal story is true really all over the world as we speak, including the United States.”
With the network that has been established, a patient is more likely to see a primary care doctor who will refer the patient to a district epilepsy care center if they are not sure how to proceed. There, the patient will be assigned a community liaison, who, among other things, will try to help the patient overcome the stigma of epilepsy.
If they have medically-refractory seizures or the seizures are not controlled, their information is sent to a regional epilepsy surgical center of excellence. If the patient is deemed surgery-eligible, the patient will be seen at the center.
“The idea is that the imaging and the EMUs [epilepsy monitoring units] are standardized across the province, and so the patients don't go to multiple visits like they used to... to determine epilepsy surgery candidacy,” Dr. Snead said.
Founded in 2013, the network is designed to provide the best care for all patients regardless of the severity of their disease and to serve patients throughout their lifespans.
“We've shortened wait lists, we've increased EMU volumes and we've increased surgical volumes over a relatively short period of time,” he said.
Still, he said, many patients and their families remain terrified of surgery, so education is a high priority. He added that many primary care providers and community neurologists in the huge province, with much of the northern area being remote and rural, are unaware of what the network is doing.
A task force there is planning to roll out a program similar to Project ECHO (Extended Capacity Health Outcomes), conceived by a gastroenterologist in New Mexico. It involves hub sites that discuss cases and provide lectures to remote sites via teleconferences, and is a concept being adopted across many disease types, Dr. Snead said.
“The network is already there, the hubs are already there, we just need to recruit spokes,” he said.
The bottom line, he said, is that “epilepsy surgery should never be considered as a treatment of last resort in any adult or child who has medically refractory epilepsy.”
Dr. Snead, when questioned after his talk, said that an identical concept might be hard to pull off in the United States, but the concept of creating better networks of care could be implemented for epilepsy patients there.
“I don't think I could have done it without a single-payer system. And I think that's what it would take to make it work in the United States,” he said. “I do think, though, that you could create a network not unlike what we have and certainly expand it significantly with project ECHO. I think project ECHO is an unbelievable concept and so elegant in its simplicity, and I think that's what could be implemented in the United States.”
Gregory K. Bergey, MD, FAAN, professor of neurology and director of the Johns Hopkins University Epilepsy Center, said referral for surgery for eligible candidates is “a big problem” in the United States.
“The idea of setting up any networks to make it easier and facilitate the early referral would be doing people a great service,” he said.
Surgery eligibility should not be delayed for a decade or more, although that is often the case, he said.
“The problem that they're identifying in Canada is not a Canadian-only problem,” he said. “In the United States, the magnitude of the problem is very comparable. That is, number one, a very small percentage of patients with drug-resistant epilepsy are being referred to epilepsy centers. And, number two, being referred only after an inordinate period of time — 10, 20 years. You don't have to go through all 23 seizure drugs to determine somebody's drug-resistant. It's a question that should be asked relatively early, that is, in 2 or 3 years after somebody has the onset of seizures.”
One development that could help in this regard is the risk of laser ablative surgery, which being applied to medial temporal sclerosis and doesn't require a craniotomy, he said.
“The hope is that that will maybe increase people's acceptance or willingness to go ahead [with surgery] because then they're not undergoing a major operation,” Dr. Bergey said. “It's a very simple procedure where you go home the next day.”