Epilepsy Currents

SAGE Publications Ltd.

Epilepsy Currents Podcasts will bring you all the features you know and love about the journal in an innovative format you can take with you wherever you go. The primary content of Epilepsy Currents consists of commentaries written by our expert editorial board on recent high-impact research papers in Epilepsy. Each podcast episode will highlight one of these recent publications and the accompanying commentary. High-yield topics of interest to our engaged epilepsy community will be presented and discussed by one of our contributing editors and the original authors to give you an in-depth, rigorous, and personal view of current topics in epilepsy and the people behind them. Topics will include both clinical and basic sciences, emphasizing bringing our larger community together around the mission we share: To advance research, education, and practice for all professionals working in epilepsy.

  1. Oct 16

    Epilepsy Currents - Episode 13- "Towards a Unified Research Agenda: International Consensus to Advance Understanding and Prevention of Sudden Unexpected Death in Epilepsy"

    Join Dr. Marawar in a conversation with Dr. Hannah Pickard and Dr. Laura Lubbers as they discuss the article, "Towards a Unified Research Agenda: International Consensus to Advance Understanding and Prevention of Sudden Unexpected Death in Epilepsy.  Click here to read the article. This podcast was sponsored by UCB. We'd like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, contributing editor Dr. Rohit Marawar, and the team at Sage. This episode covers a 2026 Epilepsy Currents Current Review by Pickard et al., an international consensus setting out a unified research agenda for sudden unexpected death in epilepsy (SUDEP). Host Dr. Rohit Marawar speaks with Dr. Hannah Pickard of the Epilepsy Research Institute UK and Dr. Laura Lubbers of CURE Epilepsy about how two national workshops held two weeks apart converged into a single set of shared priorities, and what those priorities ask of clinicians, researchers and funders. They discuss what a neurologist can do at the next clinic visit to reduce risk, the role of medication access and adherence, how to counsel patients about seizure detection devices, why the field still cannot agree on what constitutes a SUDEP animal model, what large-scale linkage of epilepsy data across healthcare systems could reveal about time-varying risk, and why the persistent gap between SUDEP guidelines and everyday practice may be the most addressable problem of all. Key takeaways: 1. Two independent efforts became one consensus: the Epilepsy Research Institute held a UK SUDEP workshop in 2024 and CURE Epilepsy held a parallel US workshop two weeks later, each unaware of the other. They merged their findings with the earlier Epilepsy Foundation SUDEP Summit over 12 to 18 months, with people with lived experience and bereaved families involved in every convening. 2. The agenda spans three domains: clinical (risk factors, personalized risk prediction, harmonized healthcare data, wearables, access disparities), preclinical (standardized models with common data elements, shared databases and tissue repositories, open-access collaboration), and awareness and education (clinician and public education, standardized discussion tools, registries and routine reporting, bereavement support). 3. Three things a clinician can do now, per Dr. Pickard: optimize seizure control, since generalized tonic-clonic seizure frequency remains among the strongest risk factors; raise SUDEP with every patient rather than only those who look high risk, because risk fluctuates; and use a structured tool such as SUDEP Action's SUDEP and Seizure Safety Checklist, shown to reduce individual risk factors. It should be a repeated conversation, not a one-off. 4. Medication adherence matters and poor access raises risk, but SUDEP also occurs in adherent patients. Devices should be chosen with a clinician by seizure type, may help most with nocturnal seizures, and have not yet been shown to improve survival. 5. The preclinical bottleneck is a definition problem. MORTEMUS showed people die after the seizure from respiratory and cardiac change, while lab animals usually die during the convulsion, so models may capture the wrong phase; CURE Epilepsy's common data elements aim to standardize protocols and reporting. Asked what would get us to a solution first, Dr. Lubbers chose awareness over any mechanism, noting families want to know, can act on it, and cope better with grief when informed.   Rohit Marawar, MD, FAAN, FAES (Host): One of the toughest phone calls a neurologist is likely to get is that their patient with epilepsy has suddenly passed away, likely from sudden unexpected death in epilepsy, commonly known as SUDEP. Across the general epilepsy population, SUDEP happens at a rate of roughly 1.2 per 1,000 patients per year. In developmental and epileptic encephalopathies such as Lennox-Gastaut syndrome and Dravet syndrome, among others, it is markedly higher, on the order of three to eight per 1,000 patients per year. And in that group, it accounts for roughly half of all deaths. Most of these deaths come without warning, and most happen at night. Today, we are talking about what it would take to change those numbers and about a group of researchers, clinicians, organizations, and bereaved families on both sides of the Atlantic who sat down together to work that out. Welcome to the Epilepsy Currents podcast, the podcast for Epilepsy Currents journal, exploring the latest research and expert commentaries from the world of epilepsy. UCB is the proud sponsor of Episode 13 of Epilepsy Currents podcast. I'm your host and Associate Editor for the podcast, Dr. Rohit Marawar. Today, we are discussing a current review published in Epilepsy Currents earlier this year, titled "Towards a Unified Research Agenda: International Consensus to Advance Understanding and Prevention of Sudden Unexpected Death in Epilepsy." I'm joined today by two of the paper's authors. Dr. Hannah Pickard is the paper's lead author and joins us from the Epilepsy Research Institute in the UK. Welcome, Dr. Pickard. And then, we have Dr. Laura Lubbers, who is the paper's senior author and Chief Scientific Officer at CURE Epilepsy. Welcome, Dr. Lubbers. Great to have you both with us. Before we get into the paper, I would like each of you to say a little about your organization and your own role in this work. Why don't we start with you, Dr. Pickard? Hannah Pickard, PhD: Yeah, of course. My name is Hannah. I'm the research partnerships lead at the Epilepsy Research Institute UK. And at the Institute, our mission is to radically advance research into the causes, prevention, and treatment of epilepsy and its associated conditions. And we do this through a number of different routes by funding research, driving strategic investment, and also advocating for the research priorities of people affected by epilepsy. And my specific role in bringing this paper together was really to manage the consensus process and bring the group together to discuss and draft our shared priorities for SUDEP. And I just want to say thank you so much for having me on the podcast. I'm really excited to join you both. Host: Wonderful. Dr. Lubbers? Laura S. Lubbers, PhD: Thank you, Dr. Marawar. CURE Epilepsy was founded in 1998 by parents concerned about the lack of knowledge about what causes epilepsy. They set out on a mission to fund research that would get to the root causes of epilepsy as a way to find better treatments and, one day, cures for epilepsy. Our focus on SUDEP started in 2004 when a bereaved parent named Jean Donalty challenged us all to learn more about this devastating outcome of epilepsy after she lost her son, Christopher. In my role, I've been able to continue to build on these efforts by expanding our research portfolio focused on SUDEP, and have been honored to work closely with Dr. Pickard on the paper published earlier this year. We're excited to be here today to talk about the progress that's been made on epilepsy and SUDEP research. Host: Thank you. Let's start with the questions. So first, a question for both of you. How did the consensus process start and develop? Were people living with epilepsy and their families involved? We can start with you, Dr. Pickard Hannah Pickard, PhD: Perfect. Thank you so much. So, this consensus process really started all the way back in 2024 for the Epilepsy Research Institute, where we held a workshop that brought together researchers, clinicians, charities, bereaved family members, and people affected by epilepsy to discuss research priorities for SUDEP. From this workshop, we, as the institute, began developing a paper outlining key priorities for SUDEP research in the UK, and we were working alongside researchers, bereaved family members, and the charity SUDEP Action to deliver this paper. And then, maybe I'll hand over to Laura to give a bit of a background on the different workshops that happened, and then I can touch on the consensus after. Laura S. Lubbers, PhD: Absolutely. So simultaneously, in the US, CURE Epilepsy was developing a very similar workshop focused on SUDEP risk prevention and assessment. We held that in the fall of 2024, just two weeks after the workshop held by the Epilepsy Research Institute. Those different convenings were really developed in isolation. But when we found out about each other, we thought, what a great opportunity to bring our learnings together and also bring in learnings from a previous workshop called the SUDEP Summit that was hosted by the Epilepsy Foundation back in 2020, 2021 timeframe. So, there were a number of convenings that had happened, but they all had a very similar outcome. And we all were coming to the same consensus. So, we decided to join forces with the Epilepsy Research Institute and summarize the outcomes of the workshops and included our partner organizations, namely Partners Against Mortality in Epilepsy, or PAME in the US, and SUDEP Action and the Centre for Global Epilepsy in the UK, who are all interested in the same topics. And the manuscript summarizes the convenings held by those different groups. Critically, all of the convenings did include people with lived experience, but I'll let Hannah talk more about how the consensus was developed. Hannah Pickard, PhD: Yeah, absolutely. So, as Laura said, we were holding these workshops separately, and then Laura and her team reached out to us to discuss putting together a consensus paper that showcased some of our shared priorities across the UK and the US. And then, really, that process evolved over a 12 to kind of 18-month period starting in early 2025, where we held several meetings to discuss priorities and really reach a consensus on the recommendations which you can see outlined in the paper and we'll discuss more today Host: Thank you. So, Dr. Lubbers, can you give an overview of the different components of thi

  2. Jul 15

    Epilepsy Currents - Episode 12- "Drugs, Diets, and DEEs — Add-on Ketogenic Diet versus Antiseizure Medications Alone in Children with Developmental and Epileptic Encephalopathies"

    Join Dr.Marawar in a conversation with Dr. Chalongchai Phitsanuwong and Dr. Priyamvada Tatachar as they discuss the article, "Add-on ketogenic diet versus antiseizure medications alone in children with developmental and epileptic encephalopathies: a prospective comparative cohort study" and its accompanying Epilepsy Currents commentary "Drugs, Diets, and DEEs: A Comparative Review of Medical and Dietary Treatments in Developmental and Epileptic Encephalopathies".  Click here to read the article. This podcast was sponsored by UCB. We'd like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, contributing editor Dr. Rohit Marawar, and the team at Sage. This episode covers a 2025 Frontiers in Neurology study by Hu et al. and its accompanying Epilepsy Currents commentary on ketogenic diet therapy for developmental and epileptic encephalopathies (DEEs). Host Dr. Rohit Marawar speaks with Dr. Chalongchai Phitsanuwong and Dr. Priyamvada Tatachar about the study's findings that add-on ketogenic diet nearly doubled seizure-freedom rates versus medication adjustment alone, and produced meaningfully better developmental/cognitive outcomes. They discuss the rationale for earlier diet initiation, practical implementation (patient evaluation, dietician-led clinics, monitoring), manageable side effects, the search for response biomarkers, referral pathways for general neurologists, and the future of DEE treatment moving toward genetically targeted therapies alongside continued diet use. Key takeaways: 1.      Ketogenic diet outperformed medication adjustment alone: ~50% seizure response rate vs. ~29%, and ~20% seizure-free vs. ~10% (RR 1.73 for response, RR 1.9 for seizure freedom), consistent with prior literature (40-60% response, 10-30% freedom in DEEs). 2.      Developmental gains, not just seizure control, may be the more striking finding: 36% vs. 5% showed developmental improvement on formal assessment, occurring even without medication changes, suggesting the diet has an intrinsic neuroprotective effect independent of seizure reduction. 3.      Both experts argue for earlier initiation of ketogenic diet, especially in syndromes like epilepsy with myoclonic-atonic seizures (Doose syndrome, 79% response rate) and infantile epileptic spasms, rather than reserving it as a last resort after drug resistance and developmental regression are already established. 4.      Side effects (mostly GI, constipation, "keto flu") are generally mild and manageable with proper monitoring (renal, bone health, lipids, micronutrients), and only ~3% discontinued therapy in the study; dedicated multidisciplinary keto clinics significantly improve feasibility and adherence. 5.      No validated biomarker yet predicts individual response to the diet (early signals around acetylcarnitine levels), but resources exist for clinicians to start a program, including the Charlie Foundation, Matthew's Friends Foundation, the International Neurological Ketogenic Diet Society, and ILAE regional clinic listings.     Dr. Rohit Marawar (Host): Imagine a child whose first year of life is measured not in milestones, but in seizures, dozens a day, while medication after medication is tried and falls short, and development quietly regresses. For children with developmental and epileptic encephalopathies, this is an all too common story. But what if one of our oldest therapies, a carefully formulated diet, could change not just the seizures, but the trajectory of a child's development?  Welcome to the Epilepsy Currents podcast, the podcast for Epilepsy Currents Journal, exploring the latest research and expert commentaries from the world of epilepsy. UCB is the proud sponsor of this episode, Episode Number 12 of Epilepsy Currents podcast. I'm your host and associate editor for the podcast, Rohit Marawar. Today, we are discussing a prospective comparative cohort study by Hu and colleagues, published in Frontiers in Neurology in 2025, and the accompanying Epilepsy Currents commentary, Drugs, Diets, and DEEs to help us unpack what this means for clinical practice. We are joined by two expert voices in pediatric epilepsy.  First is Dr. Chalongchai Phitsanuwong, author of the commentary. Dr. Phitsanuwong is a pediatric epileptologist with a focus on ketogenic diet therapy, practicing at Bumrungrad International Hospital in Bangkok, Thailand. Welcome, Dr. Phitsanuwong. Chalongchai Phitsanuwong, MD: Hello and good evening. Thank you very much for having me today. Host: And then, we are also joined by Dr. Priyamvada Tatachar, a pediatric epileptologist based in Chicago with a special interest in tuberous sclerosis and who also contributed to the commentary. Welcome, Dr. Tatachar. Priyamvada Tatachar, MBBS, MD: Good morning from Chicago, and thank you for having me on this podcast. Host: Great to have you both with us. Let's dive in. Dr. Phitsanuwong, I'm going to start with you. To set the stage for our audience, what exactly are developmental and epileptic encephalopathies, sometimes abbreviated as DEEs, and how often are they likely to be drug resistant? Chalongchai Phitsanuwong, MD: Thank you very much, Dr. Marawar. So, developmental and epileptic encephalopathies, or DEEs, represent some of the most severe forms of epilepsy. It's characterized by frequent seizures and abundant epileptiform activity on the EEG. It is commonly associated with developmental slowing and/or regression, like you said. The current consensus is that both the underlying etiology and the seizures or epileptiform discharges contribute directly to this developmental stagnation or regression. DEEs carry an exceptionally high prevalence of becoming drug-resistant epilepsy, reaching up to 70% in some cohorts, by comparison to the typical 1/3 we see in general epilepsy population. So, more than double the numbers. Host: Dr. Tatachar, from a frontline clinical standpoint, what does the day-to-day burden of a drug-resistant DEE looks like for a child and their family, and where do current medication strategies most often fall short? Priyamvada Tatachar, MBBS, MD: I think the word overwhelming comes to mind when families face the diagnosis of developmental and epileptic encephalopathies. For most patients and parents, the initial diagnosis is basically an uncharted territory that comes with a lot of fear, uncertainty, financial and social burdens, and the day-to-day challenges of caring for a child with significant medical, social, and developmental needs. It's a very daunting situation for them. Now, the current medical management focuses on the perspective of seizure control with several drugs added either alone or in combination for this reason. And as Dr. Phitsanuwong said, DEEs are particularly drug resistant. And based on the child's underlying diagnosis, additional challenges also need to be addressed for these families. Host: Dr. Phitsanuwong, the Hu, et al study, which you wrote the commentary for, found around a 50% seizure response rate with add-on ketogenic diet versus around 29% with anti-seizure medication adjustment alone, and a seizure-free rate of around 20% with diet versus around 10% with ASMs alone, both of which were deemed statistically significant. Now, how meaningful is a difference of that size to you, and how does it compare with what prior studies have shown? Chalongchai Phitsanuwong, MD: I think the result of this study is a highly meaningful context. Seizures in DEEs, like Dr. Tatachar said, are generally very difficult to control and have a high probability, of becoming drug resistant. In this prospective controlled trial, Hu and colleagues evaluated the patient with DEE who was still having seizure despite trying on an average of three anti-seizure medications already. And they found that adding ketogenic diet led to a significant higher seizure response rate. In the study, they defined as more than 50% seizure reduction, and they got the relative risk of 1.73. But what really stands out is the six-month seizure freedom rate from that. The dietary therapy group was nearly twice as likely to achieve the complete seizure freedom compared to continued medication alone, with relative risk of 1.9, so almost double. And this finding also aligned beautifully with the historical retrospective and prospective data that we have, where we typically see the seizure response rate around 40-60% in patients with DEE alongside around 10-30% complete seizure freedom rate. So, I think that it carries quite a meaningful result. Host: Great. Continuing with you, Dr. Phitsanuwong. So beyond seizure counts, the study also reported better EEG improvement and developmental gains in the diet group, 36% versus around 5% on formal assessment. Now, why is that developmental signal so important in this population, and how much weight should we give it? Chalongchai Phitsanuwong, MD: This is very important question because this highlights a critical paradigm shift in how we approach the treatment of DEEs currently. Because DEEs are commonly associated with developmental stagnation and regression that can also worsen over time, our therapeutic success cannot be measured solely just by the seizure control or seizure count. We should also focus equally on the neurodevelopmental and cognitive outcomes. While many anti-seizure medication, they are good, they can effectively reduce seizures. They frequently carry a heavy cognitive burden causing sedation, psychomotor slowing, impaired concentration, particularly in the setting of polypharmacy, which quite common in the patient with DEEs. Ketogenic diet therapy, on the other hand, offers a distinct advantage on this point. Multiple studies has shown that it can actively promote cognitive and developmental improvement, particularly in alertness, attention, and global cognitive abilities. Interestingly, there's one

  3. Apr 9

    Epilepsy Currents - Episode 11 -"TRADEOFFS: What Are Patient-Reported Outcome Measures Missing?"

    Join Dr. Bermeo in a conversation with Dr. Danielle Becker, Dr. Jacqueline French and Dr. Ammar Kheder as they discuss the article, "TRADEOFFS: What Are Patient-Reported Outcome Measures Missing?" Click here to read the article. This podcast was sponsored by UCB. We'd like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, contributing editor Dr. Rohit Marawar, and the team at Sage. The episode focuses on epilepsy outcomes that matter beyond seizure counts alone, using two 2025 papers and a related commentary to rethink how success should be measured in epilepsy care. Validation of the Seizure-Related Impact Assessment Scale by Dr. French and authors introduces a brief patient-reported tool that captures how many days are lost to seizures and how many are lost to treatment side effects. More Than Seizure Control: Multi-Dimensional Outcome Reporting in Epilepsy (MORE) as a patient-centered framework, redefining success in treatment by Dr. Kheder proposes a broader framework that combines seizure control, quality of life, and the patient's own experience of treatment. The commentary by Dr. Becker, TRADE-OFFS: What Are Patient-Reported Outcome Measures Missing?, ties these ideas together by emphasizing that better seizure control is not always a true success if it comes with worse cognition, mood, fatigue, or day-to-day functioning. The overall message is that epilepsy treatment should be judged not only by fewer seizures, but by whether life is actually better. Key Takeaways Seizure counts alone do not capture treatment success Across the discussion, a major point was that patients often care just as much, or more, about cognition, mood, side effects, independence, work, driving, and daily function as they do about seizure frequency. SERIAS measures the real-life impact of seizures and side effects Validation of the Seizure-Related Impact Assessment Scale highlights a simple tool that asks how many days, or parts of days, were disrupted by seizures and separately by treatment-related adverse effects. This helps clinicians see the net impact of treatment rather than focusing only on seizure reduction. MORE broadens outcome measurement beyond seizure control More Than Seizure Control: Multi-Dimensional Outcome Reporting in Epilepsy (MORE) as a patient-centered framework, redefining success in treatment proposes a structured way to combine seizure control, quality of life, and patient experience, so that meaningful improvement is recognized even when seizure reduction is modest. The commentary frames these issues as trade-offs TRADE-OFFS: What Are Patient-Reported Outcome Measures Missing? emphasizes that every treatment decision should consider what is gained and what is lost. A patient may have fewer seizures but worse fatigue, worse memory, heavier medication burden, or new social and functional problems. These approaches could improve both clinic care and research trials The discussion suggests that tools like SERIAS and frameworks like MORE could help with medication decisions, surgical counseling, neuromodulation follow-up, and clinical trials by capturing outcomes that matter most to patients in everyday life.   Adriana Bermeo-Ovalle, MD (Host): What if the most difficult part of living with epilepsy is not the seizures? Most people living with epilepsy report being more burdened by stigma, social limitations, and psychiatric comorbidities than by seizures themselves. So, the real question becomes: how do we measure the impact of epilepsy and the success of our treatments beyond side effects and seizure counts? UCB is the proud sponsor of Episode 11 of Epilepsy Currents Podcast. I am the senior podcast editor for Epilepsy Currents, the official journal of the American Epilepsy Society. Today, we will be discussing the epilepsy outcomes beyond seizures with a phenomenal panel of speakers. Let me first introduce our own Epilepsy Currents contributing editor, Dr. Danielle Becker, who's a recurrent guest in our Epilepsy Currents podcast. Dr. Becker wrote a commentary titled TRADE-OFFS: What Are Patient‑Reported Outcome Measures Missing? This commentary was published in October 2025. Dr. Becker, welcome back. Danielle Becker, MD, MS: Thank you so much for having me. Host: It is also my pleasure to welcome Dr. Jackie French, senior author of one of the studies which inspired that commentary published in Neurology in August 2025, titled Validation of the Seizure-Related Impact Assessment Scale. Dr. French is Professor of Neurology in the Comprehensive Epilepsy Center at NYU Grossman School of Medicine and Founder and Director of the Epilepsy Study Consortium and leader of multiple initiatives in our epilepsy community. Dr. French, welcome. It is a pleasure to have you. Jacqueline French, MD: It's great to be here. Thanks a lot for inviting me. Host: And last but not least, I am very happy to introduce Dr. Ammar Kheder, who wrote a second paper referenced also in Dr. Becker's commentary titled More Than Seizure Control: Multi-Dimensional Outcome Reporting in Epilepsy (MORE) as a patient-centered framework, redefining success in treatment. This article was published in epilepsy in March 2025. Dr. Kheder is Associate Professor at Emory University and Assistant Medical Director for Epilepsy and Neurodiagnostics at WellStar Health Systems in Georgia. Welcome, Dr. Kheder. Ammar Kheder, MD: Thank you so much for having me. It's a pleasure to be here with you today. Host: Okay. So, let's get started. Dr. Becker, how would you describe the current state of patient-reported outcomes in epilepsy? What are we still missing? What are we not capturing? Danielle Becker, MD, MS: Thank you for this important question. I feel the current state focuses on seizure frequency and seizure freedom, but we need to acknowledge that seizure freedom may not be the number one goal of our patients or the only thing that matters. And the other question is at what costs. So, there are other important factors: cognition, memory, mood, side effects, quality of life. And when you talk to patients, they often will focus on functional outcomes such as driving and employment and their independence. But they will also talk about the treatment-related adverse events and the unpredictability of seizures and how that individually affects their everyday lives. So as was mentioned in the two reporting outcome papers that we'll talk about today, they call for the incorporation of individual priorities for patients' subjective experiences really to promote that patient-centered care and improvement in outcomes not only looking at seizure frequency or seizure freedom, but also at that balance or tradeoff of treatment-related adverse events. So ultimately, with where we are today, I think we need to refocus our epilepsy care on considering outcomes that are most important to each individual patient and their families, and really move to that patient-centered care of the goals that are most important to them, as well as their seizure frequency and seizure freedom possibility. Host: Thank you for that, Dr. Becker. Very important to keep in mind what matters to each patient, what maybe to ask our patients, what really matters to you on an individualized basis. Dr. Kheder, can you please give us a quick overview of what MORE is and what it was designed to measure? And how do you envision people to use it? Ammar Kheder, MD: Well, thank you for this question. MORE is a way for capturing what doing well in epilepsy actually means in real life. I see it as a complementary to what Dr. French has done in making impact visible over time, and to the questions Dr. Becker raises about what current outcomes don't fully capture when taken individually. So instead of focusing only on seizures, MORE brings together three domains: seizure control, quality of life, and the patient's own experience. The idea in my mind is simple, a treatment isn't necessarily successful unless it improves how someone lives, not just how often they have seizures. For example, if you have two patients who might have the same seizure reduction, but one has gone back to work and reduced medication while the other is cognitively worse and more depressed, MORE is designed to see that difference. It's meant to be practical using structured questions that can fit into a routine clinic visit. It's less about replacing existing systems and more about bringing together dimensions that have often been measured separately. Host: Very interesting. I'm sure we will go over how to integrate that into the clinic and what we do on a practical basis every day. Dr. French, can I ask you the same questions for the SERIAS approach? Can you give us a high-level overview of how does it measure and what does it add compared to our tracking of traditional outcomes? Jacqueline French, MD: Absolutely. So, unlike the MORE, it really squarely focuses on whether your treatment, whatever it is, has made a positive or negative impact on an individual's life. So, it doesn't measure everything that's important to a person with epilepsy. It really focuses on has the intervention improved seizures and has the intervention, on the other hand, caused a disability because of the side effects that now have arisen? Because often when you look at outcomes from interventions, you say, "Oh, X percent of the population had a 50% reduction or a 75% reduction in seizures. And y percent had side effects or had to drop out because of side effects," but you don't know how those two interconnect with each other. So, you don't know whether there are people who are very happy having fewer seizures and no side effects, or did everybody who got improvement in seizures have side effects. And also, the other principle of the SERIAS is to keep it simple. So, it's just a series of five questions, and it really asks about ability, disability in regards to seizures and side effect

  4. 07/29/2025

    Epilepsy Currents - Episode 10 -"The Impact of Perceived Epilepsy Stigma"

    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? I. Dr Martha Sajatovic: Thank you for noticing that and appreciate that. so the goal here is that we really want to have the language that we are using be very person centered, right? in the smart program, which we'll probably talk about in a, couple [00:06:00] minutes, but, we really stress the. The point that you are a person that's living with epilepsy, you are not epilepsy. And epilepsy may impact your life in substantial ways often, but you are still an individual. You have stresses, you have joys. and so really anything that helps reinforce that, you are not this disease. Your person living with epilepsy is, extremely important. And over time, I think. Words matter. If we use words in ways that are appropriate and uplift people rather than grind them down, hopefully we can eventually win this battle against stigma.

  5. 12/17/2024

    Epilepsy Currents - Episode 9 - "Genetic Testing in Epilepsy: Improving Outcomes and Informing Gaps in Research"

    Join Dr. Bermeo in a conversation with Dr. Elizabeth Gerard, and Dr. Christa Habela, as they discuss the article, " Genetic Testing in Epilepsy: Improving Outcomes and Informing Gaps in Research ". Click here to read the article. This podcast was sponsored by Marinus Pharmaceuticals. We'd like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, contributing editor Dr. Rohit Marawar, and the team at Sage. In episode nine of the Epilepsy Currents podcast, Dr. Adriana Bermeo discusses the evolving role of genetic testing in epilepsy with Dr. Krista Habela and Dr. Elizabeth Gerard. They explore how genetic insights are enhancing diagnosis and treatment, highlighting the rapid advancements and future potential of this field. Key Takeaways Technological Advances: Since the first epilepsy gene discovery in 1997, technological advancements such as next-generation sequencing have dramatically accelerated gene identification, enhancing genetic testing's accessibility and effectiveness. Basic Genetic Concepts Clarified: Dr. Gerard explains critical genetic components—genes, chromosomes, and exomes—and their relationship to different genetic tests, providing a foundational understanding crucial for grasping how genetic variations impact epilepsy. Diagnostic Yield and Personalized Treatment: Genetic testing varies in diagnostic yield based on patient-specific factors like age of onset and associated conditions. Higher yields in targeted groups underscore its role in developing precise, personalized treatment plans. Impact on Patient Understanding and Future Testing: Genetic testing not only aids in diagnosis but also provides patients and caregivers with valuable explanations for the conditions, reducing uncertainty and informing better treatment choices. The future of genetic testing in epilepsy includes potential advancements in gene therapy and precision medicine, aiming to develop targeted treatments based on specific genetic profiles. Overcoming Barriers to Integration: Challenges like insurance coverage, the availability of genetic counseling, and the need for provider education must be overcome as genetic testing becomes integral to standard epilepsy care. This integration promises to streamline diagnostics and potentially reduce the need for other invasive tests.   Adrianna Bermeo-Ovalle, MD (Host): Why do I have epilepsy? What causes epilepsy? Are my children or other family members at increased risk of developing epilepsy as well? These are some of the most frequent questions I hear in the clinic these days. In a healthcare environment which turns more and more towards personalized medicine, genetics presents a unique opportunity to answer some of our patients most pressing questions. Today, we will explore the current indications and use of genetic testing in epilepsy and we'll take a peek into the future of epilepsy diagnosis and care.  Marinus Pharmaceuticals is the proud sponsor of episode number nine of Epilepsy Currents podcast. I am your host, Adriana Bermejo. I am the senior podcast editor for Epilepsy Currents, the official journal of the American Epilepsy Society. Let me first welcome Dr. Christa Habela. Dr. Habela is a Child Neurologist, Epileptologist, and the Director of the Long Term EEG Monitoring Program and the Epilepsy Genetics Clinic at the John Hopkins Hospital in Baltimore, Maryland. Dr. Habela is the author of the review, Genetic Testing in Epilepsy, Improving Outcomes and Informing Gaps in Research. This article was published online first on March of 2024 in Epilepsy Currents. Dr. Habela, thank you for joining us today. Christa Whelan Habela, MD, PhD: Thank you so much for having me. Host: It is also my pleasure to welcome Dr. Elizabeth Zoe Gerard. Dr. Gerard is an Associate Professor of Neurology at the Northwestern Feinberg School of Medicine and the Founding Director of the Women in Epilepsy Program, as well as the Adult Epilepsy Genetics Clinic at Northwestern. Dr. Gerard, thank you for being with us. Elizabeth E. Gerard, MD: Thank you so much for having me. It's my pleasure to be here. Host: Dr. Habela, your review starts with a very nice historical perspective, a historical overview of the development of genetic testing in epilepsy. Can you please help us understand how did we get where we are today? Christa Whelan Habela, MD, PhD: It has always been generally thought that epilepsy was a genetic disorder, even prior to any discovery of epilepsy genes. And the first gene associated with epilepsy was only discovered in 1997, and this was for the nicotinic acetylcholine receptor, and then from 1997 to 2007, only 10 more genes were discovered, and this was because we were using, very robust, but very slow and expensive Sanger Sequencing.  Early in the 2000s, the first untargeted genomic testing, came into clinical use, and this was the chromosomal microarray. This can be thought of as a very high resolution karyotype, and allowed us to look for deletions and duplications. But it really wasn't until the development of next generation sequencing which is a much faster and a much cheaper way of sequencing our DNA; that we really began to have an explosion in gene discovery. And so, beginning with next generation sequencing, this allowed us to develop whole exome sequencing, sequencing the exomes of our genes, as well as whole genome sequencing. And these two studies allowed us to identify hundreds of genes, up to a thousand genes from the years 2007 to present day. Host: Wow. So it looks like our baby steps took a long time, but we are going on leaps and bounds these days. And I imagine that we will be advancing much faster, now and into the future. Dr. Gerard, let's start with the basics to orient our audience. Could you please explain the difference between a gene, a chromosome, an exome in a way that helps our listeners follow the conversation on genetics? And if you could please link that to which tests correspond to which concept? Elizabeth E. Gerard, MD: So a gene can be thought of as a recipe for making a specific protein that's important to our body. And human genetic code contains about 20,000 recipes or 20,000 genes that make proteins. And so, as Dr. Habela was explaining, we had much faster understanding and ability to give back feedback on misspellings or typos in genes as we develop next generation sequencing. The Sanger sequencing she referred to, could really process one gene at a time. But now with next generation sequencing, we can process and understand the genetic code of multiple genes at a time. So while single gene testing is still rarely used for very specific phenotypes, like tuberous sclerosis or neurofibromatosis, more often, patients with epilepsy, with or without neurodevelopmental disorders may need a bunch of genes sequenced at the same time to increase the diagnostic yield. And one of the ways to do that are epilepsy gene panels or neurodevelopmental gene panels, which use next generation sequencing to look at usually on the order between 200 and 500 genes all at the same time and look for errors in the genetic code that may affect how that recipe works or how it may affect how you make proteins.  So that's one commonly done tests now which are gene panels. The genes or the recipes we have are organized into chromosomes. So humans have 23 pairs of chromosomes, and you can think about these as like sort of cookbooks, that contain the recipes. So another genetic variation that can happen that can contribute to disease and contribute to epilepsy, are sort of rearrangements within that chromosome book. So you can think about this as a missing page or half of a page missing. These are really deletions or duplications at the chromosomal level known as copy number variations. And these can include several genes or it can include just as small as part of one gene. And this stuff can be sometimes missed by gene panels or some next generation sequencing that's only focusing on certain parts of gene known as the exome, which we'll get to in a second. So the chromosomal microarray was one of the early tests used to make diagnosis in epilepsy and neurodevelopmental disorders. I think Dr. Habela will talk about the yield of this test, but this looks specifically for deletions or duplications at the chromosomal level. As I mentioned, there are 20,000 genes or recipes in our genetic code. And so we are moving very quickly away from these first two tests I mentioned to exomes. So whole exome sequencing, really sequences all those recipes, all the exonic parts of our recipes. We'll talk about the genetic code in our recipes, and can look at many, many, many genes at once. Even though they're looking at all of those genes in our genetic code; most exome analysis focuses on specific genes relevant to the patient's phenotype or the patient's symptoms. So this is really becoming one of the first tests that we're using in genetic testing for epilepsy and is thought by many to be one of the first two tests of choice. But there are still some things that exomes can miss. So they can miss those copy number variants in some cases if those are not at the levels that affect whole genes. Okay, they can also miss particular disorders like expansion repeat disorders, such as seen in CSTB related progressive myoclonic epilepsy. And then the other thing that's really important to recognize is that our exome with all those 20,000 genes, is really only 1 percent of all of our genetic code. So if you think about that recipe being made up of key components, like the ingredients that you need, that's really the exome. That set of instructions and those key factors that you need to make something or to make a recipe. But there's a lot of information on our genetic code in between the recipes or the small words within the recipe that actually tells us how to use it and how to make what we need to make. And that's the rest of

  6. 11/14/2024

    Epilepsy Currents - Episode 8 - "The Tell on Telehealth"

    Join Dr. Marawar in a conversation with Dr. Anup Patel, and Dr. John Stern, as they discuss the article, "The Tell on Telehealth". Click here to read the article. This podcast was sponsored by Marinus Pharmaceuticals. We'd also like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, and the team at Sage. In episode eight of the Epilepsy Currents Podcast, hosted by Dr. Rohit Marawar, the focus is on telehealth's role in epilepsy care. The episode features insights from Dr. Anup Patel and Dr. John Stern, who co-authored a review article on telehealth. They discuss the evolution of telehealth services, their importance for epilepsy patients, particularly in providing access to specialized care, and the challenges and future of telehealth in clinical practice. Brief Summary The podcast delves into how telehealth has become integral to epilepsy care, especially during the COVID-19 pandemic which accelerated its adoption and acceptance. The experts discuss the practicalities of telehealth, including the technological advancements that have made remote healthcare more accessible and effective. They also touch on the regulatory and reimbursement changes that have facilitated its broader use. The episode emphasizes telehealth's role in overcoming geographical barriers to specialized care, making it a critical service for those with mobility restrictions or who live far from epilepsy centers. Key Takeaways Historical Context and Evolution: Dr. Patel highlights that telehealth has been around for over two decades, but significant advances in technology and the necessity brought on by the COVID-19 pandemic have greatly expanded its use. The easing of restrictions around reimbursement during the pandemic also played a crucial role in its widespread adoption. Importance for Epilepsy Patients: Dr. Stern points out that beyond the convenience, telehealth is crucial for epilepsy patients due to the driving restrictions often associated with the condition. It allows patients to access specialized care regardless of geographical limitations, enhancing the quality of care they can receive. Challenges in Telehealth: Despite its benefits, telehealth presents challenges such as difficulties in performing complete neurological exams, managing neurostimulator devices and managing technological issues from both patient and provider sides. These challenges necessitate a hybrid model of care where telehealth complements, but does not replace, in-person visits. Patient Suitability: According to Dr. Patel, while telehealth is ideal for follow-up visits where a physical exam might not be critical, new patients or those needing detailed physical assessments might be better served by in-person visits. This distinction helps in optimizing care delivery based on patient needs. Future of Telehealth: Both experts agree that telehealth will continue to be a part of the healthcare landscape. Dr. Stern speculates that future enhancements may include more integrated remote patient monitoring and possibly satellite offices that provide some in-person support functions to complement telehealth visits, which could improve the quality of remote care. This episode effectively outlines the transformative impact of telehealth on epilepsy care, highlighting both its potential and limitations, and underscores the ongoing need to adapt and refine this mode of healthcare delivery to better serve patients' needs. Rohit Marawar, MD (Host): What if a doctor's visit no longer meant hours of travel or long waits in a clinic? For people with epilepsy, telehealth is redefining what access to care looks like. But is this shift here to stay? Today, we're unpacking the reality of telehealth and its growing role in epilepsy. Welcome to the Epilepsy Currents Podcast, an audio accompaniment to the Epilepsy Currents Journal, where we discuss the latest in epilepsy research and care. I'm your host, Rohit Marawar. Joining us today are Dr. Anup Patel, pediatric neurologist, and Dr. John Stern, adult neurologist, both leaders in epilepsy and co authors of the recently published Epilepsy Currents Review article, The Tell on Telehealth, which explores the evolution of telehealth, the challenges, and its impact on epilepsy patients. before we get started, a quick thanks to Mariners Pharmaceuticals, who is proud to sponsor this episode of Epilepsy Currents Podcast. welcome both. Thank you for joining us.  Let's get started, Dr. Patel. So I was intrigued to learn from your review article that telehealth isn't [00:01:00] actually a new concept and has been around for more than two decades. Could you give us a brief rundown of how telehealth has evolved over the years? And what led you to write this review article? Anup D. Patel, MD: that's a really great question. I think one of the things when we, started to look into this area as an opportunity that obviously became more available during the COVID 19 pandemic, we realized that others have been using telehealth and like you said for about 20 years, but I think the evolution really exists in the technology advances that we've had to make easier for us to actually do telehealth with a video in a safe but secure environment. I think the other big advantage obviously was the tipping point that occurred, and, during the COVID 19 pandemic. And what we recognize as an author group was that, there was not as much guidance as we needed or would want as it relates to telehealth visits, specifically The other thing is there's more than just a video [00:02:00] visit, which became obviously commonplace during the pandemic. The other advances, obviously, because of the pandemic was like the restrictions around reimbursement were reduced. And we'll talk more later in this episode about some of the licensure changes, but it was pretty open at that time, which allowed us to be able to access this technology to help improve or continue to maintain patient care. Rohit Marawar, MD (Host): Dr. Stern, why do you think telehealth has become such a crucial service for people with epilepsy? John M. Stern, MD: think an obvious part of the answer is the driving restrictions that people have who don't have seizure freedom and have epilepsy. think that's really only a small part of the importance because thankfully most people with epilepsy are seizure free. And the issue really becomes a matter of access because care for epilepsy has become much more sophisticated. It's required more specialized understanding. And Physicians who can provide that are not commonly distributed across the United States, so it's a matter of distance and access more than [00:03:00] drivability, in my mind, why it's so important, because you wouldn't want people, because of geography, to not have access to physicians with the expertise who can provide better care for them, whether or not they're seizure free. And this, in fact, maybe is no different for other conditions. beyond epilepsy. Whereas healthcare in general is shifting with this catalyst of COVID 19 to allowing people who are not geographically well situated for expertise to not be denied those opinions. Rohit Marawar, MD (Host): And again, Dr. Stern, when we compare outcomes for epilepsy patients who use telehealth versus those who have in person visits, what does the data show? Are there any major differences? John M. Stern, MD: have questions about the data because it comes down to the question of the outcomes and it comes down to, as well, how do you ascertain the outcome? people like telehealth because of the convenience, and that goes for both doctors and patients, but telehealth is not, perfect, and there are definitely problems that arise with telehealth care, which [00:04:00] we'll talk about, and so if the outcome is appreciation If we can't do this without availability and ability to communicate effectively, then telehealth can do very well. But, we need to be cognizant of telehealth being part of care delivery, and in my opinion, it's never going to replace in person visits because of the specific needs Benefits of being present with a person is two people. Rohit Marawar, MD (Host): Dr. Patel, kind of building on that, which type of patients do you think might be better suited for in person visits rather than a telehealth visit? Anup D. Patel, MD: Yeah, I think some of the research that we did and review of the literature showed that, you know, perhaps new patients would be better served, as being seen in person. I think that the other big thing is if there are motor and other, specific, um, Concerns around movement changes and for follow up patients, those would be better served in person. One of the challenges that we have with video telehealth is exactly picking up some of those [00:05:00] nuances, in the exam format. But otherwise, you know, there are a lot of advantages like Dr. Stern mentioned to the telehealth visit? and most of the epilepsy follow ups, you know, obviously the exam isn't going to be as helpful. So in those situations, telehealth might be a little bit more ideal, but. Beyond that, you know, like Dr. Stern said, the other area that really favors inpatient is if you have a neurostimulation device, to be able to interrogate or evaluate that device, it really needs to obviously be in person in this present day. Now that may change with some of the technological advances on the horizon, but as of now, those patients should be seen at least once a year, if not more, inpatient for that device interrogation. Rohit Marawar, MD (Host): Makes sense. Dr. Patel, your article includes a comprehensive table on how to conduct a successful telehealth visit. Could you share some key considerations and maybe a few tips from your personal experience that have made your telehealth appointments run smoother? Anup D. Patel, MD: Yeah, and I think [00:06:00] we've learned a lot in this area. I think that the assumptions we had m

  7. 08/20/2024

    Epilepsy Currents - Episode 7 - "It's Current: NAEC Provides Us With the Recipe to Build a Better Epilepsy Center"

    Join Dr. Bermeo in a conversation with Dr. Susan Arnold, and Dr. Fred Lado, as they discuss the article, "It's Current: NAEC Provides Us With the Recipe to Build a Better Epilepsy Center". Click here to read the article. This podcast was sponsored by the National Association of Epilepsy Centers (NAEC). 2023 Guidelines for Specialized Epilepsy Centers We'd also like to acknowledge Epilepsy Currents podcast editor Dr. Adriana Bermeo-Ovalle, and contributing editor Dr. Rohit Marawar, and the team at Sage.  In episode 7 of the Epilepsy Currents podcast, the discussion focuses on the 2023 Guidelines for Specialized Epilepsy Centers, published by the National Association of Epilepsy Centers (NAEC). Hosted by Dr. Adriana Bermeo, the episode features insights from Dr. Susan Arnold, the senior author of the executive summary of the report, and Dr. Fred Lado, president of the NAEC and the first author of the guidelines. The guidelines aim to set comprehensive standards for epilepsy care, particularly addressing the needs of patients with drug-resistant epilepsy. Brief Summary The 2023 NAEC guidelines for epilepsy care are designed to elevate the standards of care provided at specialized epilepsy centers. These guidelines distinguish between best practices for patient care and accreditation standards, the latter being what centers must meet to receive NAEC accreditation. Developed through an "evidence-informed consensus" process, these guidelines include contributions from a diverse panel, including neurologists, nurses, EEG technologists, social workers, neuropsychologists, patients, and caregivers. This inclusive approach ensures that the guidelines address comprehensive needs across the spectrum of epilepsy care. Key Takeaways Guideline and Accreditation Distinction: Dr. Lado clarified the difference between the NAEC's guidelines and its accreditation process. The guidelines represent consensus on best practices in epilepsy care, while accreditation standards are specific criteria that centers must meet to demonstrate adherence to these practices. This distinction helps centers focus on gradual implementation of the guidelines without immediate pressure for compliance. Inclusive Development Process: Dr. Arnold emphasized that the guidelines were developed through an evidence-informed consensus, incorporating opinions from a broad array of stakeholders, including those directly affected by epilepsy. This method helps ensure that the guidelines are comprehensive and address practical aspects of patient care. Focus on Comprehensive Care: The guidelines have expanded to cover not only inpatient and surgical care but also comprehensive outpatient services, reflecting the realities of where most epilepsy care occurs. This shift acknowledges the importance of accessibility, communication, and specialized services for various patient groups. Resource Considerations: Recognizing the resource-intensive nature of comprehensive epilepsy care, the guidelines provide a framework for centers to gradually adapt to higher standards without abrupt changes. This gradual implementation is intended to ease the burden on centers, allowing them time to secure necessary resources. Future Directions and Improvements: The guidelines are seen as a living document, with the NAEC planning more frequent updates to keep pace with advancements in epilepsy treatment and care. This adaptive approach aims to ensure that the guidelines remain relevant and practical for implementing the latest best practices in epilepsy care.   Transcript    Adrianna Bermeo-Ovalle, MD (Host): The main purpose that brings our community together is our desire and resolve to offer people living with epilepsy the best alternatives of diagnosis and treatment; the ones that will empower them to live their best possible life. But what does that mean in practical terms? How do we put that intention into clinical practice? The National Association of Epilepsy Centers, NAEC, has taken a careful look at this question. We are delighted to have the opportunity to discuss together the 2023 Guidelines for Specialized Epilepsy Centers that will inform epilepsy care in the present and the future. Welcome to Episode 7 of Epilepsy Currents Podcast. I am your host, Adriana Bermeo. I am the Senior Podcast Editor for Epilepsy Currents, the official journal of the American Epilepsy Society. Let me first welcome Dr. Susan Arnold. Dr. Arnold is Adjunct Professor of Pediatric Neurology at Yale University School of Medicine. She's the Senior Author of the Executive Summary of the Report of the National Association of Epilepsy Centers, entitled Guidelines for Specialized Epilepsy Centers, which was published by the Green Journal Neurology in February of 2024. Dr. Arnold, thank you very much for joining us today. Susan T Arnold, MD: I'm very happy to be here. Host: It is also my pleasure to welcome Dr. Fred Lado. Dr. Lado is the president of the NAEC and professor of neurology at the Zucker School of Medicine in Hofstra University in Long Island, New York. Dr. Lado is the first author of the guidelines, which you can find linked to the Epilepsy Current site and at the NAEC home site. Dr. Lado, thank you for being with us today. Fred A. Lado, MD, PhD: Thank you, Adriana, for the opportunity to speak with you. Host: Great. For our listeners and our readers of Epilepsy Currents, you can also find an It's Currents commentary authored by Dr. Katherine Nichols and published in the May 2024 issue of Epilepsy Currents. So let's get this conversation started. Dr. Lado, I will start with you. Could you please explain to our listeners the role of the National Association of Epilepsy Centers in setting national standards for epilepsy care, especially for those dealing with drug resistant epilepsy? Fred A. Lado, MD, PhD: So the NAEC was founded in 1987, and since almost the beginning, has published quality standards around the functioning and the care given in epilepsy centers. These standards have been updated approximately every 10 years. And these standards are different from the accreditation program that the NAEC runs. That accreditation program began in 2016. The guidelines have been the basis for developing accreditation standards, but for accreditation standards, centers have to provide evidence that they're meeting the guidelines. Guidelines are really focused on what is best practices. What is the best level of care that patients should be receiving? Accreditation standards are focused on, are centers implementing these guidelines? Are they actually providing these services? Many of the recommendations that you'll find in these new guidelines are already present in prior versions of the NAEC guidelines and in the accreditation program, but many of the guidelines in the current version are new and sort of stretch the boundaries of areas that the NAEC is addressing as part of comprehensive epilepsy care. We recognize that in sort of moving the goalpost somewhat, that in expanding the scope of guidelines, that epilepsy centers need to have adequate resources to implement. And so the process of incorporating these guidelines into accreditation is one that will unfold over the coming years, not all at once. Host: Thank you very much for that answer. Can you just once more clarify what is the difference, how are the guidelines different from the accreditation process for the people in the epilepsy centers who may get a little bit nervous about all the new recommendations that come in the guidelines? What is the urgency for them to implement all of these recommendations into the care they provide for their patients? Fred A. Lado, MD, PhD: Yes, this is a topic of great sensitivity in epilepsy centers. The guidelines, as we'll discuss are really the product of a consensus across sub specialists, patients, administrators, EEG techs, certainly epileptologists, about what makes a good epilepsy care, what makes a successful epilepsy center in taking care of patients. But the guidelines are sort of a recommendation of best practices. They are not accreditation standards. Accreditation standards are what the NAEC uses to judge whether a program is meeting the requirements for NAEC accreditation, and that might involve showing reports, might involve doing a certain volume of particular cases or surgeries, it has different specific requirements. The accreditation standards that the NAEC establishes and changes and updates from year to year, are informed by these guidelines. But the guidelines are a statement of what is considered best practice. The accreditation standards are a statement of what centers have to do to become accredited. Host: Thank you very much for clarifying that for our listeners and our readers. Dr. Arnold, we understand that these guidelines were developed through a process that is called evidence informed consensus. Can you please elaborate on the methodology and how does it influence the recommendations provided? And if you could, how are they different from the prior guidelines published by the NAEC? Susan T Arnold, MD: So, the idea when you're writing guidelines is really to have an evidence based process where you survey the literature, collect information, grade the evidence that you collect, and then write your recommendations based on that evidence with the level of the evidence supporting your guideline. And that works very well for clinical treatment guidelines, where you can search the literature and find studies that compare, for example, one intervention to another. Unfortunately, for an operational guideline, such as the one we were writing for epilepsy centers, the literature doesn't have a lot of information. And where we do have evidence, it's often not of very high quality and it has gaps. And so in that circumstance, you go to expert opinion. And so what we did is follow an evidence informed process; where we su

  8. 06/05/2024

    Epilepsy Currents - Episode 6 - " Hiding in Plain Sight—Neighborhood Versus Individual Determinants of Psychological Outcomes in Patients With Epilepsy"

    Join Dr. Bermeo in a conversation with Dr. Jarrod E. Dalton, Dr. Bruce Hermann, and Dr. Samuel Terman, as they discuss the article, "Hiding in Plain Sight—Neighborhood Versus Individual Determinants of Psychological Outcomes in Patients With Epilepsy ". 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). These activities are supported by the Centers for Disease Control (CDC) 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% funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor are they an endorsement, by CDC/HHS, or the U.S. Government. We'd also like to acknowledge contributing editor Dr. Rohit Marawar, and the team at Sage. Summary The podcast features a discussion on how environmental conditions, specifically neighborhood deprivation, affect cognitive outcomes and mood in individuals with pharmacoresistant temporal lobe epilepsy. Dr. Hermann & Dr. Dalton's study found that patients living in more deprived areas exhibited significantly lower cognitive performance and increased levels of anxiety and depression compared to those in less deprived areas. Dr. Terman's commentary critically assesses these findings, stressing the importance of considering environmental factors alongside biological ones in understanding and treating epilepsy.   Key Takeaways Impact of Neighborhood Deprivation: The study highlighted a strong correlation between increased neighborhood deprivation and poorer cognitive outcomes as well as higher levels of anxiety and depression among epilepsy patients. This suggests that external environmental factors play a crucial role in the health outcomes of individuals with temporal lobe epilepsy. Role of Area Deprivation Index (ADI): The ADI is utilized to quantify neighborhood deprivation, encompassing factors like income, education, and housing conditions. It provided a robust framework for analyzing the socioeconomic conditions impacting patient outcomes, underlining the relevance of broader social determinants in health disparities. Implications for Clinical Practice: These findings underscore the need for clinicians to consider the socioeconomic environment of patients when diagnosing and treating epilepsy. Addressing environmental factors could enhance therapeutic outcomes and improve quality of life for patients. Study Limitations and Future Research: Dr. Terman noted limitations such as the cross-sectional nature of the study, which complicates the ability to infer causation. He advocates for longitudinal studies to better understand how and when neighborhood factors impact patient health, potentially leading to more targeted interventions. Potential for Broader Implications: The discussion extends beyond epilepsy, suggesting that similar environmental influences could be significant across other neurological and psychiatric conditions. Future research might explore how modifications in social policy and urban planning could mitigate these health disparities. [00:00:00] Adriana Bermeo (Host): It is well known that individuals living with epilepsy are at risk of experiencing cognitive decline and psychiatric comorbidities. But did you know that the individual's home address plays a significant role in the cognitive and psychiatric outcomes of people living with temporal lobe epilepsy? [00:00:18] Welcome to episode number six of Epilepsy Currents podcast. Today, we will be talking about the role of environmental factors on cognition and mood of patients with temporal lobe epilepsy. I am your host, Adriana Bermeo. I am the Senior Podcast Editor for Epilepsy Currents, the official journal of the American Epilepsy Society. [00:00:40] I want to first welcome contributing editor, Dr. Samuel Terman, who wrote the commentary, Hiding in Plain Sight--Neighborhood vs. Individual Determinants of Psychological Outcomes in Patients with Epilepsy. This commentary was published on the March 2024 issue of Epilepsy Currents. [00:01:00] Dr. Terman is an Assistant Professor at the University of Michigan. Dr. Terman, welcome to Epilepsy Currents Podcast. [00:01:07] Samuel W. Terman, MD, MS: Thanks so much. Happy to be here. [00:01:09] Host: It is also my pleasure to welcome Dr. Bruce Hermann, who is the Senior Author of the work that inspired this commentary, titled Association of Neighborhood Deprivation with Cognitive and Mood Outcomes in Adults with Pharmacoresistant Temporal Lobe Epilepsy. Their paper was published in Neurology in June 2023. Dr. Hermann is Emeritus professor of Neuropsychology at the University of Wisconsin School of Medicine and Public Health. Welcome, Dr. Hermann. Thank you for being with us. [00:01:39] Bruce Hermann: Thank you, and good afternoon. [00:01:41] Host: We are also joined by Dr. Jarrod Dalton, who is co-author on the original paper. Dr. Dalton is an Associate Professor and the Director of the Center for Population Health Research at the Cleveland Clinic's Lerner Research Institute. Dr. Dalton, thank you for being with us today. [00:01:58] Jerrod Dalton, PhD: And thank you. [00:01:59] Host: While [00:02:00] neurologists and epileptologists are familiar with the effects of the biological characteristics of the lesions causing epilepsy, the neurophysiological findings of the treatments we use in the clinic, we are much less likely to consider their patient's immediate living environment, their access to healthy foods, exposure to violence, or their access to transportation as potential modifiable variables directly affecting someone's epilepsy outcomes. [00:02:28] Dr. Hermann. Would you mind sharing with us a snapshot of the findings from your study in a way our listeners can grasp? [00:02:35] Bruce Hermann: Dr. Busch and I have been collaborators for quite some time, and she was able to compile an amazing cohort of 800 patients with pharmacoresistant temporal lobe epilepsy who underwent neuropsychological assessment as part of their inpatient evaluations at the Cleveland Clinic. And then, she and Dr. Dalton extracted home addresses from the EMR and binned the patients into ADI quintiles. [00:03:00] And from the neuropsychological battery that was quite extensive, as is commonly the case in preoperative evaluations, the data was reduced to seven mean cognitive domains, things such as intelligence, language, visual perception, verbal and visual memory, executive function, processing speed. And then, secondarily classified all the patients into four cognitive phenotypes that range from intact, essentially unaffected, to generalized cognitive impairment. [00:03:32] So, the core finding and most important finding was that examination of the relationship of the Area Deprivation index was closely aligned with the cognitive scores. So as deprivation increased, cognitive scores went down. This was seen across seven of the six cognitive domain scores, and greater deprivation was associated with the more abnormal cognitive phenotype. And increasing neighborhood deprivation was also associated with [00:04:00] greater anxiety and depression. So, it really was quite a signal that we were able to observe. And as Dr. Terman pointed out in his commentary, you can just take a look at IQ. Quintile 1, the least deprived group, had a mean IQ score of 100, which is dead average. And the most deprived quintile, Quintile 5, their mean IQ was 86, which is a full standard deviation below average. So, very reliable and fairly strong signal throughout these results. [00:04:28] Host: Yeah. Really striking findings, which seem to point out that the deprivation that patients are exposed is almost as important as the biology of the condition. And I'm sure we will discuss that in length later. Dr. Dalton, the concept of the Area Deprivation Index, or ADI, plays a central role in the study. Can you please help us understand what does this measure? How do these quintiles work? And how is this measurement different from other measurements of socioeconomic status? [00:04:59] Jerrod Dalton, PhD: [00:05:00] Sure. Yeah, the Area Deprivation Index is a tool that we use in our research in a lot of settings. We work with clinical specialties across Cleveland Clinic and use this as one tool for understanding place-based health disparities. Essentially, the Area Deprivation Index, it's a latent variable model or a factor model that produces an index that captures correlation among 17 neighborhood-level characteristics. The ADI was established at the National Cancer Institute in 2003 by a demographer and sociologist named Gopal Singh. It was designed as scale of neighborhood socioeconomic position as opposed to socioeconomic status, which I can distinguish a little bit between the two. And it incorporates aspects of social organization, income, housing, economic inequality, and opportunity structure. [00:05:56] So, the indicators that comprise the ADI [00:06:00] are varied, but they all speak to overall socioeconomic characteristics. So, it'll include measures of education, proportions by level of education. It includes measures of income, such as median family income, income disparities. It includes measures of housing and housing affordability, median home value, median rent, monthly mortgage amounts, and percent of households [00:06:27] It also includes economic and employment measures such as labor force participation rates and poverty rates, family structure measures such as the percent of single-parent households among those with somebody less than 18 years of age, and a series of resources such as motor vehicle ownership, telephone ownership, and whether or not households have plumbing. [00:06:50] Host: And those variables are related to the neighborhood where the patient is living rather than to the individual patient. I

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About

Epilepsy Currents Podcasts will bring you all the features you know and love about the journal in an innovative format you can take with you wherever you go. The primary content of Epilepsy Currents consists of commentaries written by our expert editorial board on recent high-impact research papers in Epilepsy. Each podcast episode will highlight one of these recent publications and the accompanying commentary. High-yield topics of interest to our engaged epilepsy community will be presented and discussed by one of our contributing editors and the original authors to give you an in-depth, rigorous, and personal view of current topics in epilepsy and the people behind them. Topics will include both clinical and basic sciences, emphasizing bringing our larger community together around the mission we share: To advance research, education, and practice for all professionals working in epilepsy.

Information

  • Creator
    SAGE Publications Ltd.
  • Years Active
    2022 - 2026
  • Episodes
    14
  • Rating
    Clean
  • Copyright
    © 2022
  • Show Website
    Epilepsy Currents

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