Dr James Wheless on Implications, Strategies of Managing Epilepsy Amid COVID-19

Forming an action plan to manage treatment of patients with epilepsy, as well as factors such as stress and anxiety that may be intensified amid the COVID-19 pandemic, can assist in lessening the uptick of seizures and emergency department use, said James Wheless, MD, director of the Le Bonheur Comprehensive Epilepsy Program and chief of the Department of Pediatric Neurology at the University of Tennessee Health Science Center.

Transcript

AJMC^®: Hello, I'm Matthew Gavidia. Today on MJH Life Sciences News Network, The American Journal of Managed Care^® is pleased to welcome Dr James Wheless, director of the Le Bonheur Comprehensive Epilepsy Program and chief of the Department of Pediatric Neurology at the University of Tennessee Health Science Center. Can you introduce yourself and tell us a little bit about your work?

Dr Wheless: Sure, i’m Jim Wheless, glad to be here with everybody. I'm a pediatric neurologist, I've been involved in the niche of kind of looking at folks with epilepsy, gosh for over 30 years now—has been involved in that time in over 140 research projects looking at ones that run the gamut from new treatments to new diagnostic techniques, but just trying to help improve the quality of life and improve our treatment for folks with epilepsy.

AJMC^®: Amid the hysteria of the COVID-19 pandemic, mental health has become a major topic of discussion. Notably, increased levels of stress, anxiety, and depression nationwide can be caused by and contribute to impaired sleep. Can you discuss what implications this may have for patients with epilepsy adjusting to this new normal?

Dr Wheless: So for, obviously, for a lot of us, this has been a stressful last kind of 2, 3 months. I think we all hopefully are over the worst part, but it's still there, right? It hasn't gone away for all of us. Especially for folks with chronic medical illnesses, and especially for folks with epilepsy, I would say. Probably unique to folks with epilepsy for a couple of reasons. We know that, in general, if they're sleep deprived, so if they're not getting enough sleep, whether it's worry, anxiety, stress—whether it's stats about COVID-19 or how do I get my medicines going to the pharmacy–that can actually trigger seizures.

So, that's a little different from other medical illnesses, so it can actually cause health related problems from it. We know that certainly adolescents and adults with epilepsy are more prone to have even before this, anxiety and mood disorder. If you've kind of got a little bit of that at baseline when you're doing okay and then you throw something like this on top of it, where your whole routine has been upended and a lot of our world’s different, it can really ratchet that up. So, we've been kind of, I guess what I would call—talking to our patients kind of how do you minimize anxiety kind of 101, which works for all of us, but especially for our patients.

We've been very proactive. We've been, from the get go when they started saying you got to have routine. So, I get it you may be stuck at home, and whether you're going to work or school or you’re home from college—you got to have a routine, that's going to be key. So, get a time to get up, try and eat healthy, regular meals. If you can, depending on where you live, try and get out and walk or do something during the day. Take your medicines on time, but keep that routine, get to bed on time–that's really critical. This is a minimal step to kind of just make their overall stress kind of a little bit better.

AJMC^®: How can neurologists optimally talk with patients with epilepsy on emotional health and sleep health?

Dr Wheless: Yeah, so great question. So, luckily, when we were seeing patients even well before they started, and I think many of our colleagues, I mean, if they were coming back for a regular kind of epilepsy follow-up visit, we would ask about the logical things. Are you having seizures?

Are you having any side effects for medicine? Do you need medicine refills? But we knew even before all this era, patients were more at risk to have sleep problems, have mood disorders. So, even before this, we were talking and regularly asked him, were you having any trouble falling asleep or waking up at night? Trying to address those, and we're asking about things related to mood and behavior.

With this, in some ways it’s almost been easier to feel we could say, well, gosh, you're stuck at home now, tell me about your routine, what's changed? A lot of times the patient's would say, oh, yes, it’s been really tough being at home, I really feel stressed. So, it almost seemed like it was easier for them to bring it up in some ways, if you will, and make that conversation almost more natural to be having at that time.

AJMC^®: As emergency departments have become over-crowded and potential hotspots for COVID-19 infection, what significance can rescue medications have for patients? And how often are these medications needed in those with epilepsy?

Dr Wheless: Yeah so, our patients with epilepsy, obviously, if you're well controlled, we want to keep them that way, but we have patients that have pretty good control, but once in a while their seizures uptick, they'll have a cluster of them or they'll have a flurry of it. Much like patients with asthma, we've kind of explained to our patients with epilepsy if they were on kind of baseline medicines to keep their kind of asthma under control, but most asthmatics will have an inhaler or something they can do when things get worse. So, something they could do at home, and they don't have to go to the emergency room.

Obviously, just like our asthma patients, if they get bad enough there are times you have to go to the emergency room. So, we're not saying don't ever go there, but if we can deal with it at home, it’s usually better even before all this started as well. So, it's this same concept—the big difference is that historically, we didn't have great options for our patients, whereas asthma patients did. So, we really didn't have good rescue treatments.

So, beginning at the end of last year, and the beginning of this year, we've had 2 new rescue agents approved that are both intranasal treatments. I may have forgotten—I may have 1. This is what they look like. So, it's easy, just hold up the nose, there's a button on the bottom, you push to insert in the nose and deliver the dose. So, the patient does not have to be kind of with it. They could be in the middle of a seizure or between seizures and tired or whether a spouse or parent can do it.

There's 2 of those available now. One is an intranasal formulation of midazolam, and it's called a NAYZILAM^®, and the other is an intranasal formulation of diazepam called VALTOCO^®, but I think it's worth talking to neurologists. They're new enough and they came out on the front end of this—many neurologists aren't aware of them because they're not getting out to meetings, some of their offices may be limited to who can come in. So, they may not even know they're kind of out there yet. For our patients, obviously, at this time, we would like to say, gosh, if we can treat you at home and not have you go to the emergency room, you’re better off. Again, if they have to be there, they have to be there, but we'd really like to avoid that if we can.

AJMC^®: Can you discuss some epilepsy action plans that have been designed for patients?

Dr Wheless: Yeah, so with our patients in general, again, even before this, we kind of covered things that would come up that could cause their seizures get worse. So, if you have a stomach problem, whether it's a stomach bug or something, you threw up your medicine. Depending on which medicines you're on, what do you do as far as maybe redosing those or not redosing so we cover that. We cover kind of having a little bit of an emergency supply of medicine because what came up more was usually in winter months, for example, but what if there was a bad storm, and pharmacies were closed, you couldn't get out for a couple days or close to the end of your prescription—keep a week or 10 days on hand, so you can ride through that.

With this, we've had a lot more people ask about getting their medicine by mail services. So, a lot of folks had that option before, but weren't taking advantage of it. Now, all of a sudden, they kind of see the utility of that and say, gosh, I really want to get my medicine through the mail. So, we've kind of walked through that as well. Then another part of that, obviously, things we talked about, getting adequate sleep, and then having kind of a rescue plan.

So, at what point if your seizures have uptick, would you give yourself or your loved one rescue therapy. If that works great, and if it doesn't, what's the next step? Then usually, we're seeing them back, we're following up on their rescue plan just to review it and see, did you implement it? And if it did, did it work? Because if it worked great, and we were set, we've got a plan that we know going forward we can use. If it didn't work quite as well as we want, if we need to tweak it or adjust it, that's the perfect time to do that. So, hopefully going forward, we're better off.

AJMC^®: What impact has telehealth use had for management of epilepsy? What feedback have patients provided from these online consultations?

Dr Wheless: So, telehealth is something that probably every doctor in America was a year ago, maybe 1% of us were doing it. Now we're all doing. So, I think it's been nice because it's, I don't know I'd say it's a silver lining of the current epidemic, but it's 1 of the nice things that's happened because of it is that we really all got up to speed very quickly on telehealth and not just doctors, our patients too. Patients didn't have that concept necessarily before either. We've all kind of gotten more comfortable and figured this out together, but for a lot of our patients, it's been huge. The ability to connect with a doctor that they trust and know, just to touch base. Even if they're doing good, just so that they know when their doctor is still there, that they're doing okay, just that interface—just kind of helping with that anxiety a little bit. We can get their medicine refills, if they're doing good.

Obviously, for the people that need to get a hold of us just to fill that need as well too. So, it really I think has been huge for a lot of patients and as you might guess, there's a lot of folks that really have not wanted to get out at all. So, just critical for them to be able to do it. I think going forward, once this is over, we've understood where it fits in better. I mean, there's some people that I just have to see in the office, whether it's to examine them in critical labs or diagnostic tests we do at the office, but there are a lot of folks that we could do some of their visits by telehealth and for a lot of them, just the convenience of they could be at home, I could be in my office. We can do a 20 or 30 minute visit, but they haven't driven in an hour to get here. They haven't had to find parking, you know, get to the office drive back home. So, just that convenience, I get that for a lot of—if we can accomplish the same thing by telehealth is great just beyond the kind of reassurance that it provides to them.

AJMC^®: What further advancements in epilepsy management are still warranted to address factors related to this pandemic?

Dr Wheless: So, I think that the other things that will still come up related to this is I still think the concept of kind of having some backup emergency medicines. Many of our patients’ insurance plans are just really tight, you're not able to get your refill until the end of the month, within a few days, and I really think we've got to give the patient a little bit more latitude. Some have been better about that saying, oh, we only used to allow 30-day refills, we'll give you 3 months now.

So, I think the insurance companies have responded, some of them in a positive way. I hope that continues because our patients really need that. So, to not have that sense of anxiety about just their baseline medicines, I think that would be huge for our patients as well to be able to do that. The other spin off for a lot of our patients is some of the kind of diagnostic safety laboratory testing when you do which is usually blood work. A lot of them really didn't know their local labs and have been surprised to find out, oh, there's a place really close by to me and I can get it done and they can just electronically send the results to Dr. Wheless.

So, I think that's been a good thing, and if we can kind of keep up some of those relationships we've built with local providers, for our patients from a distance, just the ability to kind of work together better to take care of our patients, I think that'll be huge too if that same kind of motivation is still there, as things kind of calm down after this. That'll be a real plus as well.

AJMC^®: Lastly, are there any topics that you want to address that have not yet been talked about?

Dr Wheless: I think the other thing for both patients and providers keep in mind is we've all kind of been at home and a lot of stuff has been put on hold obviously, because of COVID-19. Everything is COVID-related, the news, everything is and appropriately so; but I think for our doctors out there, that means that many of them have not gone to medical media since they've been cancelled. A lot of even non-COVID research has kind of been put on hold or shoved back. A lot of new advances some of the doctors are not aware of.

So, I think for the doctors, it’s almost kind of making it a point to say, gosh, I'm going to have to go to a virtual meeting because my live 1 got canceled and because this is new stuff that's important for my patients that I take care of, that I need to know. I think for kind of the research community going forward, we'll be playing kind of catch up this summer and fall and saying, okay, we've got stuff that we need to get back on track with, keep moving the needle forward with taking care of our patients with epilepsy and kind of advancing the care that we can provide them and kind of the state of art in this area.

AJMC^®: Thanks, Dr Wheless!

Dr Wheless: Listen, great talking to you, thanks Matthew!

AJMC^®: To learn more, visit our website at ajmc.com. I'm Matthew Gavidia. Thanks for joining us.