Wearable devices to help track seizures and beyond
This month’s episode of Epilepsy Explained focuses on wearable seizure detection devices with Dr. Steven Karceski, epileptologist at New York-Presbyterian Hospital at the Weill Cornell Medical Center. Dr. Karceski discusses current devices available and the future of these devices, as well as what to consider when purchasing a device, who might want to consider a wearable device and why.
On Wearable Devices Explained, Dr. Karceski answers the following questions:
0:14 What do wearable devices do?
1:13 How do wearable devices differ from implanted devices like VNS, DBS, and RNS?
2:13 What are some wearable devices that are currently available for people living with epilepsy?
4:05 Under what circumstances might someone consider a wearable epilepsy device?
5:48: If SUDEP is a concern, can wearable devices reduce the risk of SUDEP in those living with epilepsy?
8:15 What should I consider when choosing a wearable device?
11:07 How expensive are wearable devices and might they be covered by insurance?
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Video Transcript
What do wearable epilepsy devices do?
Dr. Steven Karceski:
When it comes to seizures, there are actually many ways that wearable devices function. One is to try to record a person’s seizures. In other words, to give an idea of how often these might be happening. But there’s really a lot more than a device can do. It can send signals back to a website or maybe your doctor to let them know that seizures have happened. We can teach and ask devices to capture other pieces of information, whether it’s about medications or many other treatments that a person might be going through. And of course, nowadays, we’re all wearing in some way wearable devices, whether it’s smart watches or cell phones, and we can track all kinds of things like sleep patterns and sleep habits, and some of these things really overlap with seizures. Sometimes that can be very important with how to best manage a person’s epilepsy.
How do wearable devices differ from implanted devices like VNS, DBS, and RNS?
Dr. Steven Karceski:
It’s a great question, and for me it’s really literally the difference between wearable meaning not implanted and one of these devices which really requires surgery. And for the DBS, the RNS or the VNS, we need to place these in a surgical procedure, in a location in the body that allows us to really optimize or get these devices to work in the best way that we possibly can in the way that they’re designed to function. Whereas when it comes to a wearable device, we’re thinking about things that now are literally things we wear, things we can take off, put back on when needed. We can wear some of these devices around the clock if that’s what’s needed to capture information and then use this information to make really good solid decisions about treatment. Do we need to adjust treatments? Are we doing a great job already? That’s the difference for me in terms of implantable versus wearable.
What are some wearable devices that are currently available for people living with epilepsy?
Dr. Steven Karceski:
My first thought was to remind ourselves that there’s a tremendous amount of research that’s going on right now looking into ways to best identify seizures as they’re happening. Now, there are lots of ways to measure seizures. One is to look for shaking, let’s say, of an arm or a leg, something that’s very, very common during certain kinds of seizures. We can look at changes in basically skin sweat, which also occurs more in certain kinds of seizures. We can look for changes in heart rate.
You can see where actually all of these things might be important and how we combine this information in the best possible way, really is what all the research is designed to do, is to find a device that really could, using these different sources of information, allow us to measure seizures very accurately and very faithfully. Now, that was a long way to start all of this, and I think that devices that are currently available mostly are in the form of really a watch or a watch-like device, similar to what I think most people are familiar with their smartwatches or maybe like a Fitbit that you would wear on your wrist.
Something that would measure things like heart rate, shaking or arm movements, and then things like sweating, all of which can change during a seizure. I think those are the ones that are currently available, at least both in Europe and the United States. Are there other ones being developed? Absolutely, yes. And I think what we’re going to see over the next probably two, five and certainly 10 years are not only a lot more in the way of these devices, but I think ones that are much more sophisticated and actually much more accurate in measuring the different kinds of seizures a person might experience.
Under what circumstances might someone consider a wearable epilepsy device?
Dr. Steven Karceski:
There are actually quite a few that I can think of right away. I think one would be for person who may be experiences seizures, but really doesn’t have the ability to remember that they occurred. In other words, it’s actually hard for them to keep track of the seizures that they’re having. Another situation would be where a person lives alone, whether in an apartment or maybe actually there are other people that live in the apartment or in the home that they live in, but they don’t really share the same room. In other words, this person would spend a lot of time basically on their own, where having a record, having some type of measurement of seizures would be a really strong positive, at least in terms of driving or helping decision-making for treatments. Some people experience most of their seizures when they’re sleeping, and wearing a device during sleep, one that could monitor and record seizures could be very helpful.
Now there’s another aspect to wearable devices that we often think about and consider, and that is the device could send information to my care team, my doctor, my nurse, and anyone else who’s involved in the treatment of seizures and could send that information, let’s say once a week or once a month to basically alert them or inform them of the number of seizures and the kinds of seizures that are happening. Now, I’d like to come back to that in a little bit when we talk more about the effectiveness of these devices because there are some nuances to this, but I think those would be the kinds of things that immediately come to mind when considering how a wearable device might really be helpful to a specific person.
If SUDEP is a concern, can wearable devices reduce the risk of SUDEP in those living with epilepsy?
Dr. Steven Karceski:
This is one of the biggest concerns that doctors have as that is the rare possibility usually associated with convulsions, tonic-clonic seizures is this thing called SUDEP, and there’s been a lot of research try to understand SUDEP better. And until we really understand this more, much of the effort has been focused on ways that we can either detect or prevent these very serious consequences of seizures. And this is where wearable devices could really help. If we think about it, these devices are very good at picking up on tonic-clonic seizures. Now it’s not a hundred percent, but it’s very high and low to mid-nineties by the way, like 91 to maybe 94%. If that’s the case, we could see where not only can a device keep track of a seizure, but we can envision a time where maybe a device could also send an impulse, let’s say to 9-1-1 to alert them that a seizure actually is in progress.
And in that way, to be able to get to a person very quickly and make sure that whatever medical treatment is needed could be given right away to prevent this very serious thing from happening. But to me, in order for that to be a very effective way of using a wearable device, I think we’d want to have accuracy that was higher than that. And the other thing is we want to make sure that the device is not sending what we call false positives. In other words, an alert that a seizure is happening when in fact a seizure is not occurring. And an example of this would be let’s say I was on my treadmill at home exercising, and my arm is shaking as I’m running on the treadmill and I’m starting to get a little bit sweaty from running on the treadmill.
The device could pick up on the shaking and the sweating and maybe the increase in my heart rate and make an assumption that a seizure was occurring when in fact it wasn’t. And the last thing I want to do, EMS knocking on my apartment door when I’m in the middle of my exercise routine, wondering what’s going on and am I actually in the middle of having a problem? You could see where accuracy in both areas more accurate in terms of seizure detection and more accurate in terms of eliminating these false positives is going to be a critical factor to deal with for devices to really help us in this area.
What should I consider when choosing a wearable device?
Dr. Steven Karceski:
I always think of a couple of things right away. The first and foremost is I want a device that’s very, very accurate and ideally a device that could pick up on lots of different kinds of seizures, not just the tonic-clonic seizures, but if I had absence seizures or perhaps myoclonic seizures, I want to be able to pick up on those as well. Now I admit we don’t really have a device that is yet anyway capable of identifying all of the different kinds of seizures a person might experience. Devices nowadays are really best at identifying tonic-clonic seizures or convulsions.
The first is accuracy, and there’s a lot of reasons for this. I want to capture information that I can talk with my doctor, discuss treatment options, and really try to figure out what’s the best way to proceed. I want to have information that’s not confusing. This idea, again, of false positives where if the device is saying that potentially I’m having several seizures a day when in fact I know I’m not, I don’t want to confuse the picture either, I want it to be accurate both from the standpoint of seizure counting, but also to make sure that it’s not giving me information that might be basically wrong or inaccurate.
I think ease of use is a very big part of all this, and by that I mean not just the ability to take it off and put it back on with ease, but also to be able to recharge it very easily. I don’t want a device that’s very complex or one that I need to interact with and need to tell it a lot of information, or maybe I have to hook it your computer and then work on the computer for a while to really optimize the use of a device like this. I’d really rather have a device that was a little bit more on its own, something that I could just take off when I need to, put it back on when I need to and have it just do its thing and record this information very accurately and very consistently throughout that time.
I think the last part is, and this is where we don’t still yet know how to use this information best, but I think I want a device that’s very versatile, one that potentially could record lots of different kinds of information and using all of those different pieces of information to really optimize my seizures the best way possible, whether that’s seizures in sleep, seizures that might occur more during certain parts of the day. You see what I mean? I want a device that can do all of those things and maybe actually one that can even learn a little bit and really be customized to me so I can get the most out of it. Nowadays, we probably don’t have a device that can actually quite do all of those things, but I can tell you the research is definitely going in that direction and I think within the next few years we’re going to be seeing devices that are fully customizable and something that will really give us much more accurate, consistent information.
How expensive are wearable devices and might they be covered by insurance?
Dr. Steven Karceski:
It is another really important part of all of this, and one we didn’t touch on, and that is how expensive is a device? And there’s really two components to it. First is buying the device itself, but for some of these devices, a person also has a monthly subscription where they upload data using their device. In other words, it’s the initial investment, but potentially a month-by-month charge as well. There are two parts of this to consider. Now in the United States it’s always very complicated because each insurance plan is different. Some of the plans do in fact cover these costs, some cover only part of the costs, and I’m sorry to say some insurance companies cover none of the costs. One of the ways to figure this out that is how much investment am I going to have in a device like this is to work with your insurance company, really talk with them and try to figure out, “Is this something that’s possible?” Or, “Is it just so expensive maybe it’s something that I really can’t consider, at least not right now?”
