Dr Sharon ChiangSharon Chiang, MD, PhD
Patients with epilepsy and the physicians treating them are faced with many challenges by the disease, but one of the most difficult is assessing an individual patient’s risk of having a seizure. One of the best ways to determine the frequency of their seizure events is to use seizure diaries, though even these can present visualization issues for the treating physician.

However, with advances in medical technology such as the incorporation of wearable monitoring devices, it has become easier for patients to track their seizures accurately and in a way which is more digestible and analyzable for their provider.

At the 2019 International Epilepsy Congress, June 22-26, in Bangkok, Thailand, Sharon Chiang, MD, PhD, resident physician, neurology, University of California San Francisco, gave a presentation highlighting the importance of seizure diaries and how they can help physicians better understand the seizure risk of an individual patient at a given time. She sat with NeurologyLive® to share her insight into the topic.

NeurologyLive®: What role do seizure diaries play in the epilepsy diagnostic and treatment process?

Sharon Chiang, MD, PhD: As physicians, whenever patients come into office visits, we usually sit down with them and we'll review with them how many seizures they've had since their last visit. Based on that understanding of how many seizures they've had; we use this to better make a judgment about whether or not they responded to treatment or whether or not we need to change treatments. But, a major clinical challenge in this relates to the fact that oftentimes the patients have fluctuations in their seizure frequencies. This could be caused by natural variations, natural variability in their actual epilepsy disease course or it could also be caused by a worsening or improvement in their actual seizure risk. One can see that, if misinterpreted, this could potentially lead to either unnecessary or potentially even harmful treatment adjustments.

How are these diaries employed in practice? Is there a specific patient age group or subgroup for which these are most useful?

Diaries can be really used for across the lifespan. A lot of it can be very useful if your patients have a lot of seizures or they have a very complex natural history, in which case we can better understand the patterns and their seizures and what sorts of triggers may be precipitating them and what is the rhythmicity of their underlying seizure risk. Beyond that, they can be helpful across the lifespan in the sense that, oftentimes, the unpredictability affects a lot of people with epilepsy, and even beyond the injuries that can possibly happen, they can lead to a feeling of helplessness. Keeping a good seizure diary can often help you to kind of understand your own epilepsy and understand when the periods are where you're at high risk versus low risk and, in that aspect, it can be helpful to many people. Patients can record their seizures, and they record when they have specific triggers or things that they think may have precipitated them, and we use that data to estimate what their underlying seizure risk is and to provide a model that can determine when changes in their seizure frequency are caused by actual improvements or worsening and seizure risk, versus secondary just to natural variability.

Should seizure diaries and seizure recording technology be used across the board more consistently?

We definitely need a more systematic way to record seizures. Oftentimes, when patients bring in seizure diaries, we look at them and then we don't have the time to kind of visualize them when they're just written down in a table format. I think using electronic diaries can really help in the sense that we can then track things over time. It's also a more centralized way that we can communicate between providers so that if patients show up at different encounters—say to the emergency department—that this information can be brought up and then visualized to see, if the patient had a seizure, is this something that you can see the diversity and risk for? That can really help us to centralize each people's treatment, so I think it is useful across the board. If we could do this more consistently, it might be helpful to be able to improve people's care.

What role do wearables and other devices play in the use of electronic seizure diaries?

There are a lot of ongoing efforts right now to synchronize a lot of the automated detection of seizures into these electronic seizure diaries. That effort is going to be really amazing because it takes a lot of the burden off of the patient to record these. Obviously, when you have a seizure it's great if you can know what time it happened and all these things, but often times people can't remember, or they may not have someone available to just be recording the time of the seizure. The detection devices that we have—there are so many amazing ones that are out now and that are coming out, and I think that synchronizing them into e-diaries is going to be amazing for helping that.

With some of the patients we've seen, sometimes it can be helpful in the sense that when you record a seizure, it's almost like you didn't let it get away from you. You can write it down and you can make sure that you're on top of the seizure, rather than it being on top of you. It is a challenge sometimes, always having to remember to record your seizures. I've heard also that some people say that sometimes e-diaries serves as a reminder to them that they are having seizures. But ultimately, the recording of them allows you to better understand the patterns of your seizures. There's a lot of new evidence that seizures do have rhythmicity in many patients, and if we can understand your rhythmicity, we can identify when you're at periods of lower risk and higher risk and that knowledge might be really helpful for people not having to worry all the time.

Transcript edited for clarity. For more coverage of IEC 2019, click here.
REFERENCE
Chiang S. Hidden in plain sight: revealing seizure risk with seizure diaries. Presented at: 2019 International Epilepsy Congress. June 22-26, 2019; Bangkok, Thailand.