Addressing the Gaps in SUDEP Education Among Neurology Trainees

Fabio Nascimento, MD

Using an emailed survey, investigators found that less than half of national (44%) and international (41%) adult neurology trainees were educated about sudden death in epilepsy (SUDEP), and most were unfamiliar with its risks and strategies to prevent it. The research included 171 adult neurology trainee respondents in the US and 171 respondents outside of the US.

While a large majority of US residents reported being familiar with the term SUDEP (97%) and its definition (93%), familiarity with its risk factors was reported by only 61% of respondents and potential mitigation SUDEP strategies by 63%. Lead author Fabio Nascimento, MD, has been helping to lead efforts that take an analytical approach to addressing gaps within epilepsy education. He’s previously published research on inconsistencies in teaching and evaluating residents on electroencephalogram (EEG) during residency.

Nascimento, a clinical fellow at Massachusetts General Hospital, shared that his experiences throughout his medical education tenure have motivated him to conduct these types of studies. He sat down with NeurologyLive to provide a greater look at the most alarming findings, reasons to continue to highlight these gaps, and why understanding the risk factors of SUDEP are the most critical aspect to trying to prevent it.

NeurologyLive: What motivated you to conduct this research on SUDEP?

Fabio Nascimento, MD: It falls within that same category of education research, focusing on adult neurology residents and trainees. This research was more comprehensive since we included international trainees as well. We’re trying to see where there are gaps in knowledge within the adult neurology resident cohort out there. I’ve been interested in SUDEP for a long time. I got hooked up with Dr. [Orin] Devinsky at NYU [Langone], who is one of the world leaders and a mentor and friend of mine. I’ve been working with him for a while now.

I coupled my interest in SUDEP with what I saw in residency myself. Although we talk about SUDEP all the time, we don’t usually talk to patients about it in the real day-to-day life. I rarely did at the beginning of residency. I did maybe a little more than my peers just because I had that interest. It still wasn’t enough.

It’s been shown in literature that we don’t do a good job as practicing neurologists to tell patients about SUDEP. Patients want to know more, and they wish they known more, especially for family members and caregivers who’ve experienced it. Putting those together, I saw that there’s a need. In my experience, I didn’t think we were doing a good job from a training standpoint. We hypothesized that minimal SUDEP education was playing a role down the road in not telling patients about SUDEP. That’s how this research started.

What was the most troubling finding?

First, although trainees know what SUDEP means and what it entails, a lot of them don’t know about the risk factors associated with it and how to prevent it. It was interesting to see that discrepancy there. They should all know the risk factors and how to prevent it to the best of their capabilities. The second point that stuck out was that when we asked whether they talked with their patients about it about 50% of PGY years 1-4 in the states and PGY years 1-6 in other countries did not talk to their patients about SUDEP.

Where do you believe these gaps in knowledge stem from?

It comes from at least 2 aspects. When we asked them if they had formal education on SUDEP or not, less than half of them said ‘yes.’ There’s a good chunk of residents that didn’t get formal education about it. If you’re not educated about it, you don’t feel comfortable talking to your patients about it. That’s the first thing. Secondly, even for those residents and trainees who have been educated about it, it remains a delicate issue. It’s not just one lecture. It’s a delicate topic to talk about to patients. That’s why we proposed at the end of our research to add some sort of structured training for residents so that they know how to address it, what to say and what not to say. I’m talking about the whole process of counseling, not using PowerPoint slides and say this is what it is, now go back to being on call.

Why are understanding the risk factors of SUDEP so important?

The most alarming finding was the lack of awareness and knowledge on about strategies to prevent SUDEP. That’s all we have. There’s no medication or anything you can prescribe to cure SUDEP. It entails you knowing or selecting the high-risk patients and then counseling them in an appropriate fashion. That includes telling them to be compliant with their medications so that they avoid their convulsive seizures and therefore, your risk of SUDEP is lowered. Reminding them to not drink alcohol in excess because it’s a risk factor as well. Or if you have nocturnal seizures, there are devices out there that you can buy or go through your insurance that could potentially save your life.

Transcript was edited for clarity.

REFERENCE

Nascimento FA, Laze J, Friedman D, Lam A, Devinsky O. SUDEP education among US and international neurology trainees. Epilepsy Behav. Published online June 7, 2021. doi: 10.1016/j.yebeh.2021.108098