Communication and Cooperation in Epilepsy Care

Steven S. Chung, MD, the executive director and program chair of the Neuroscience Institute and director of the Epilepsy Program at the Banner University Medical Center

Steven S. Chung, MD

The medical understanding of epilepsy has never been better, but there are still voids in treatment to fill, and ways to improve care for patients.

One of those ways, according to Steven S. Chung, MD, is to improve the communication between the general neurology community and the epileptology community. Chung, the executive director and program chair of the Neuroscience Institute and director of the Epilepsy Program at the Banner University Medical Center, noted that with new therapies coming through the pipeline each year, there will always be a need to ensure this communication is as smooth as possible.

To discuss the new therapies that he has his eye on—and what the general neurologist needs to know about them—Chung spoke with NeurologyLive in an interview, providing insight into the pipeline and the care of patients with epilepsy.

NeurologyLive: Is there anything in development for epileptic conditions that is striking to you?

Steven S. Chung, MD: One medication, fenfluramine, which is still a pipeline medication—one of the interesting things was, when they did a study for Dravet syndrome, it actually provided for quite significant reductions, by far better than any other medication has shown in that disease state. How that works exactly is not clear yet, but the proposed mechanism of action has something to do with the modulating serotonergic mechanisms—kind of like an anti-depressant type medication. It’s a new mechanism of action that needs to be further looked at. But fenfluramine was a medication that people used for weight loss before, so the safety concern is there, and I think companies are looking at safety information in quite more detail. The medication called fen-phen that people used for weight loss is actually the same ingredient as fenfluramine. That’s something that we’re looking closely at, but it has not been approved by the FDA.

The other worthwhile medication is cenobamate. Both medications are on track, if everything goes well, to be approved. Fenfluramine for Dravet syndrome first, then possibly later for LGS. Cenobamate is being examined for a wide variety of focalized seizures, a lot of more common types of seizures than LGS or Dravet syndrome.

What should the general neurologist know about these therapies?

The initial challenge will be to get familiar with these medications. It is nearly impossible for the general neurologist to understand all the ins-and-outs of the new medications every year. There are newer medications for not only epilepsy, but MS and Parkinson, and all other disease entities, so I think it’s very difficult to keep up with and get familiar with all the new medications. Especially when they do not have a large volume of these patients.

But the most important thing for them is that help is around the corner, so when they see the refractory patients with the usual medications that they use for epilepsy, they should think about the other options that are available that they may not be familiar with, such as the newer medications. Even with the newly approved medications, they should think about seeking help or an opinion from the epilogist in their local or regional area. That might be a step that we can do together to help the patient, rather than trying all the same medications. Just understanding that there’s a new medication that could be somewhat different, or quite different, from the existing medication.

The second thing is that now, we understand there are many different types of syndromes that cause seizures and epilepsy, and we actually have a much better understanding, with genetic screening and genetic testing, of what causes what, what syndrome is present, and how we identify those syndromes. LGS used to be a very rare disorder that presented in about 5% of pediatric patients, but we estimate that now, it’s a lot more common. The new definition of LGS, how to identify patients with LGS, is one of the campaigns of education for the general neurologist. Their job is not only to recognize who has seizures and who doesn’t but also what type of seizures and underlying syndrome or disease may cause those seizures. It is about time now the neurologist thinks more intensely about the possibility of the underlying cause, especially when epilepsy has been diagnosed early in life. Again, not much was available back when, and patients carried the vague diagnosis of severe refractory epilepsy with mental impairment, which could be Dravet syndrome, or LGS, or something else. We do have to have some education and understanding, especially with childhood and infantile-onset epilepsy, so we could further guide the family and find an appropriate treatment for this population.

Is there a need to improve channels of communication with the general neurologist?

How we’re going to facilitate the communication is really tough. I don’t know what the best way is, but I think it’s better to hook them up with epilepsy specialists sooner rather than later. If somebody’s comfortable using different medications, obviously they don’t have to immediately refer the patients to epileptologists, especially for those conditions they recognize as not just adult-onset. But with pediatric-onset or when there’s a suspicion of a specific syndrome, such as LGS or Dravet—because there’s some medications that make these worse—you can at least have a second look by the epileptologist to confirm the diagnosis, so we can choose the right and proper treatment for that individual patient.