Join Dr. Marawar in a conversation with Dr. Danielle Becker and Dr. Martha Sajatovic, as they discuss the article, "The Impact of Perceived Epilepsy Stigma"

Click here to read the article.

This podcast was sponsored by the American Epilepsy Society through a grant from the Centers for Disease Control (CDC).

This activity is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $1,500,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.

We'd like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, contributing editor Dr. Rohit Marawar, and the team at Sage.

Summary

In a baseline analysis from the CDC-funded SMART self-management trial, Dr. Martha Sajatovic's team evaluated 120 adults with uncontrolled epilepsy using the 10-item Epilepsy Stigma Scale. Higher perceived stigma was not tied to seizure frequency or most demographics; instead it clustered around a short list of modifiable factors: being single, receiving little social support, scoring low on the Epilepsy Self-Efficacy Scale, and reporting poorer day-to-day functioning. Dr. Danielle Becker's accompanying commentary argues that these "big three" drivers—self-efficacy, social isolation, and depression—form a hidden clinical burden as real as any EEG abnormality and should be addressed as routine vitals in epilepsy care. Both authors highlight peer-led programs such as SMART, which blend nurse facilitation with a trained person-with-epilepsy co-leader, as a scalable way to lift self-confidence, expand support networks, and ultimately blunt stigma's impact.

Key Takeaways

Core Correlates of Stigma: In the SMART cohort, the strongest independent predictors of high stigma scores were low social support, low self-efficacy, and poorer functional status; seizure count and most demographic variables showed no significant link.
Self-Efficacy Is Central—and Modifiable: Lower confidence in managing seizures (self-efficacy) tracked closely with higher stigma. Boosting patients' belief that they can control triggers, medications, and disclosure decisions is a direct route to stigma reduction.
Depression Magnifies Stigma's Weight: Undiagnosed or undertreated depression deepens perceived stigma and worsens quality-of-life scores, underscoring the need for systematic mood screening and at least initial SSRI therapy while specialty referrals are arranged.
Peer-Led Self-Management Programs Work: Evidence-based curricula such as SMART (eight weekly Zoom sessions co-led by a nurse and a trained person with epilepsy) consistently raise self-efficacy scores, increase rescue-plan use, and shrink stigma—benefits that persist when agencies or clinics adopt the program.
Clinic & Policy Action Points: Ask about stigma, self-efficacy, and mood at every visit; offer a printed or electronic referral to a vetted self-management course or local support group; and advocate for payer coverage of these programs so that addressing stigma becomes as routine—and reimbursed—as ordering an MRI.

Dr Rohit Marawar (Host): [00:00:00] Picture this scenario. Two patients leave clinic on the same day. One with excellent seizure control, yet feeling ashamed to mention their diagnosis. The other with daily seizures, but surrounded by supportive friends who see them not their epilepsy. Those contrasting stories sit at the heart of today's conversation about stigma and invisible force as real as any spike and view on an EEG.

Welcome to Epilepsy Currents podcast, the podcast for Epilepsy Currents Journal, exploring the latest research and expert commentaries from the world of epilepsy. I'm your host and associate editor for the podcast, Rohit Marwar. To unpack why stigma still sticks, and more importantly, what we can do about it.

We are joined by two leading voices. First is Dr. Martha Stoic, first author of the article, clinical Correlates of Perceived Stigma Among People Living With Epilepsy, enrolled in a Self-Management Clinical Trial. Published in Epilepsy and Behavior Journal in [00:01:00] 2024. She's a professor and director of the Neurological and Behavioral Outcome Center, university Hospitals, Cleveland Medical Center in Cleveland, Ohio.

Welcome Dr. Wick.

Dr Martha Sajatovic: Thank you.

Dr Rohit Marawar (Host): Then we have Dr. Daniel Baker, whose commentary, the stigmatizing impact of perceived epilepsy stigma. Puts those findings in a broader public health frame. Dr. Becker is the division director of epilepsy and associate professor of neurology at the Ohio State University Wexner Medical Center.

Welcome, Dr. Becker.

Dr Danielle Becker: Thank you for having me.

Dr Rohit Marawar (Host): Great to have both of you on our podcast today. Let's dive in. To kick things off, Could you give us a quick elevator pitch of your study, who you enrolled, what you measure, and the takeaway finding our listeners should remember?

Dr Martha Sajatovic: Yes. Thank you. I'm happy to talk about that. So, this analysis comes from a larger parent study. That was funded by the Centers for Disease Control and Prevention, or CDC. we are part of a, network called the Managing [00:02:00] Epilepsy Well or MU Network, which has been supported by the CDC for many years.

The goal of the MU network is to develop, and test, evidence-based epileptic self-management. Curricular programs. This, analysis came from one of our randomized clinical trials that we are doing, testing a program called the Smart Epilepsy Self-Management, program. In this analysis, we focused just on baseline data.

So we weren't looking at outcomes, but we were interested in looking at the correlations or the associations between, perceived stigma. So stigma that people, perceive people with epilepsy perceive in relation to demographic and other, clinical variables. So, basically we found that, stigma was related to, not very many demographic variables, really just, not being married or, cohabiting, but we did find that, higher levels of stigma were associated with.

Less social support. So I was thinking of that in the little scenario that you gave, lower, scores [00:03:00] on a standardized rating of self-efficacy and lower functioning as well. So, there's appears to be that inverse, relationship.

Dr Rohit Marawar (Host): Dr. Becker, you call stigma a hidden burden in your commentary from your vantage point, what does the burden look like in the everyday lives of people living with epilepsy in 2025?

Dr Danielle Becker: Thank you. So I do wanna say that I think this hidden burden is not only on our patients, but also on the caregivers. Both the patients and the caregivers live with fear that a event or a seizure can happen at any time, and we know that that's associated with significant emotional burden.

This emotional burden leads to both mental and physical health. It leads to anxiety and depression. We also know that it affects opportunities for patients with employment, with education, with developing social relationships. So in all we know that it, really is impacting mental health and we really, through this commentary and through Martha's.

Paper and [00:04:00] work with the smart program. We know that when you have depression, especially undiagnosed depression, it worsens stigma and really that is a heavy burden on our patients and caregivers.

Dr Rohit Marawar (Host): Well said, Dr. Vic. We hear the terms stigma and perceived stigma to. Around, and I think you also mentioned that just now, but how do you separate the two and why did you land on the 10 item epilepsy stigma scale? To capture it,

Dr Martha Sajatovic: so that's a really excellent question. There are actually different types of stigma. if you look at the stigma literature, so there's, felt stigma, you know, if I am going to discriminate against you, sometimes called proceed stigma. there's, what we. As individuals get from our society or from those who are close to us, how do we get treated or discriminated against?

there's also a, internalized stigma. Where were people? you know, if you tell something to somebody often enough that's negative [00:05:00] about themselves, often, eventually they will start to believe that. So what we are really looking at is a standardized scale. So there aren't actually that many specific, epilepsy stigma scales around.

Rather, this was one that had already been tested and used, and we, thought would be generalizable to, the other literature. So what do people with epilepsy experience and what do they perceive?

Dr Rohit Marawar (Host): Okay, great. and I'll stay with you Dr. So. We have moved away from the term epileptic people to the more app appropriate term persons with epilepsy or people with epilepsy. I noticed that you use the term people living with epilepsy in this study, which was a first for me. Why did you use that term, and why is that wording choice important in the fight against stigma?

Dr Martha Sajatovic: Thank you for noticing that and appreciate that. so the goal here is that we really want...