Pub Date : 2026-03-01Epub Date: 2026-01-23DOI: 10.1016/j.yebeh.2026.110908
Alejandra Duque Ramirez , Amy E. Werry , Asra Tanwir , Charles Akos Szabo
Interictal QTc-interval changes and heart rate variability (HRV) are reported in people succumbing to sudden unexpected death in epilepsy (SUDEP). We evaluated cardiac biomarkers recorded during video-EEG monitoring in nine SUDEP/near-SUDEP cases and compared them to 9 age- and gender-matched people with psychogenic nonepileptic episodes (PNES) treated with anti-seizure medications (ASMs). QT-interval measurements and root-mean-squares-of-successive-differences (RMSSD) between normal heartbeats were assessed in artifact-free awake and sleep electrocardiograms during the first (F24) and last 24-hour periods (L24) of video-EEG recordings. HRV, heart rate (HR) and QTc-intervals as well as interval changes between F24 and L24 differed significantly between SUDEP/near-SUDEP and PNES groups. QT-intervals were shorter in the SUDEP/near-SUDEP than PNES group, both remaining stable from F24 to L24. While HRV was decreased in both groups compared to age- and gender-based normative values, HRV was significantly lower at L24 and in the SUDEP-/near-SUDEP. On the other hand, awake and sleep HR and HRV tended to diverge between the two groups from F24 to L24, driven by HR decreases and HRV decreases during wakefulness in the PNES group, and HR increases HRV decreases during sleep in the SUDEP/near-SUDEP group. In summary, decreased QT-interval duration in the SUDEP/near-SUDEP group reflect repolarization abnormalities associated with epilepsy, and may be a harbinger for SUDEP. Decreased HRV in sleep at L24 and divergent changes in HRV and HR between F24 and L24 compared to the PNES group likely reflect seizure-induced alterations of sympathovagal tone in the SUDEP/near-SUDEP group as well as the reversal ASM-related effects in the PNES group.
{"title":"Retrospective comparison of interictal cardiac biomarkers of SUDEP or near-SUDEP with PNES patients","authors":"Alejandra Duque Ramirez , Amy E. Werry , Asra Tanwir , Charles Akos Szabo","doi":"10.1016/j.yebeh.2026.110908","DOIUrl":"10.1016/j.yebeh.2026.110908","url":null,"abstract":"<div><div>Interictal QTc-interval changes and heart rate variability (HRV) are reported in people succumbing to sudden unexpected death in epilepsy (SUDEP). We evaluated cardiac biomarkers recorded during video-EEG monitoring in nine SUDEP/near-SUDEP cases and compared them to 9 age- and gender-matched people with psychogenic nonepileptic episodes (PNES) treated with anti-seizure medications (ASMs). QT-interval measurements and root-mean-squares-of-successive-differences (RMSSD) between normal heartbeats were assessed in artifact-free awake and sleep electrocardiograms during the first (F24) and last 24-hour periods (L24) of video-EEG recordings. HRV, heart rate (HR) and QTc-intervals as well as interval changes between F24 and L24 differed significantly between SUDEP/near-SUDEP and PNES groups. QT-intervals were shorter in the SUDEP/near-SUDEP than PNES group, both remaining stable from F24 to L24. While HRV was decreased in both groups compared to age- and gender-based normative values, HRV was significantly lower at L24 and in the SUDEP-/near-SUDEP. On the other hand, awake and sleep HR and HRV tended to diverge between the two groups from F24 to L24, driven by HR decreases and HRV decreases during wakefulness in the PNES group, and HR increases HRV decreases during sleep in the SUDEP/near-SUDEP group. In summary, decreased QT-interval duration in the SUDEP/near-SUDEP group reflect repolarization abnormalities associated with epilepsy, and may be a harbinger for SUDEP. Decreased HRV in sleep at L24 and divergent changes in HRV and HR between F24 and L24 compared to the PNES group likely reflect seizure-induced alterations of sympathovagal tone in the SUDEP/near-SUDEP group as well as the reversal ASM-related effects in the PNES group.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110908"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146035128","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-20DOI: 10.1016/j.yebeh.2025.110870
Josefine Klakk , Betina B. Trabjerg , Theresa Wimberley , Oleguer Plana-Ripoll , Bjarke Feenstra , Jakob Christensen , Julie W. Dreier
Background
Seizure disorders, including epilepsy and febrile seizures, affect around 5% of all children in Western countries. Although these conditions may be associated with psychosocial challenges, their impact on school well-being remains unclear. We examined the association of childhood epilepsy and febrile seizures with school well-being.
Methods
We conducted a register-based cohort study including children born in Denmark (2000–2014) who participated in the Danish National Well-being Survey (2015–2022) [a survey mandated by law in all public mainstream schools in Denmark]. Children with epilepsy and febrile seizures were matched (1:10) by age and sex to unaffected children. Children with epilepsy and febrile seizures were identified from hospital contacts and antiseizure medication use. Poor school well-being was defined using systematic survey data. Adjusted odds ratios (aORs) with 95% CIs were estimated using logistic regression.
Results
Among 770,988 eligible children, 6,862 (0.9%) had epilepsy and 30,851 (4.0%) had febrile seizures, matched to 68,620 and 308,510 unaffected peers, respectively. Among children with epilepsy, 7% of assessments in grades 0–3 indicated poor overall well-being versus 6% in matched peers (aOR, 1.12; 95% CI, 0.99–1.28). In grades 4–9, 10% versus 8% indicated poor well-being (aOR, 1.18; 95% CI, 1.10–1.27), and the association was strongest for academic well-being (aOR, 1.35; 95% CI, 1.27–1.43). Children with febrile seizures had odds of poor well-being similar to their matched peers.
Conclusion
Childhood epilepsy was associated with marginally poorer school well-being, although more pronounced in later grades and academic domains, underscoring the need for educational and psychosocial support. Febrile seizures were not associated with poor well-being, providing reassurance for affected children and their families.
{"title":"School well-being in children with epilepsy and febrile seizures: A Danish nationwide cohort study","authors":"Josefine Klakk , Betina B. Trabjerg , Theresa Wimberley , Oleguer Plana-Ripoll , Bjarke Feenstra , Jakob Christensen , Julie W. Dreier","doi":"10.1016/j.yebeh.2025.110870","DOIUrl":"10.1016/j.yebeh.2025.110870","url":null,"abstract":"<div><h3>Background</h3><div>Seizure disorders, including epilepsy and febrile seizures, affect around 5% of all children in Western countries. Although these conditions may be associated with psychosocial challenges, their impact on school well-being remains unclear. We examined the association of childhood epilepsy and febrile seizures with school well-being.</div></div><div><h3>Methods</h3><div>We conducted a register-based cohort study including children born in Denmark (2000–2014) who participated in the Danish National Well-being Survey (2015–2022) [a survey mandated by law in all public mainstream schools in Denmark]. Children with epilepsy and febrile seizures were matched (1:10) by age and sex to unaffected children. Children with epilepsy and febrile seizures were identified from hospital contacts and antiseizure medication use. Poor school well-being was defined using systematic survey data. Adjusted odds ratios (aORs) with 95% CIs were estimated using logistic regression.</div></div><div><h3>Results</h3><div>Among 770,988 eligible children, 6,862 (0.9%) had epilepsy and 30,851 (4.0%) had febrile seizures, matched to 68,620 and 308,510 unaffected peers, respectively<strong>.</strong> Among children with epilepsy, 7% of assessments in grades 0–3 indicated poor overall well-being versus 6% in matched peers (aOR, 1.12; 95% CI, 0.99–1.28). In grades 4–9, 10% versus 8% indicated poor well-being (aOR, 1.18; 95% CI, 1.10–1.27), and the association was strongest for academic well-being (aOR, 1.35; 95% CI, 1.27–1.43). Children with febrile seizures had odds of poor well-being similar to their matched peers.</div></div><div><h3>Conclusion</h3><div>Childhood epilepsy was associated with marginally poorer school well-being, although more pronounced in later grades and academic domains, underscoring the need for educational and psychosocial support. Febrile seizures were not associated with poor well-being, providing reassurance for affected children and their families.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110870"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146017736","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Refractory epilepsy in children remains a major clinical challenge, often resistant to standard antiseizure therapies. Identifying novel biomarkers may open new avenues for understanding disease mechanisms and predicting treatment response. This study investigated serum Galectin-3 (Gal-3) and cadherins as potential biomarkers in pediatric epilepsy.
Methods
We analyzed serum samples from 30 children with refractory epilepsy, 33 patients on antiseizure drug monotherapy (valproic acid, levetiracetam, carbamazepine), and 66 age- and sex-matched healthy controls. Commercial ELISA assays were used to quantify Gal-3, N-cadherin (N-cad), and E-cadherin (E-cad) levels.
Results
Gal-3 levels were markedly elevated in both epilepsy groups compared with controls (p < 0.001), with the highest concentrations observed in the polytherapy subgroup. In contrast, N-cad expression was reduced among epilepsy patients, although children on polytherapy exhibited relatively higher levels than those on monotherapy. No significant differences were found for E-cad.
Conclusion
Elevated Gal-3 is strongly associated with drug resistance, whereas reduced N-cadherin may reflect underlying pathophysiological mechanisms of epilepsy. To our knowledge, this is the first pediatric study evaluating Gal-3 alongside cadherins. These findings highlight their potential as novel biomarkers of disease progression and treatment response, offering a foundation for future biomarker-driven therapeutic strategies in childhood epilepsy.
{"title":"Clinical implications of galectin-3, N-cadherin, and E-cadherin as potential biomarkers in childhood epilepsy","authors":"Peren Perk , Arzu Yuksel , Gulsen Sener , Sevinc Mertoglu , Merve Cakmak , Zeynep Oz Dagdelen , Seyda Dogantan , Rahime Koc , Pınar Arıcan , A. Gumus","doi":"10.1016/j.yebeh.2026.110916","DOIUrl":"10.1016/j.yebeh.2026.110916","url":null,"abstract":"<div><h3>Background</h3><div>Refractory epilepsy in children remains a major clinical challenge, often resistant to standard antiseizure therapies. Identifying novel biomarkers may open new avenues for understanding disease mechanisms and predicting treatment response. This study investigated serum Galectin-3 (Gal-3) and cadherins as potential biomarkers in pediatric epilepsy.</div></div><div><h3>Methods</h3><div>We analyzed serum samples from 30 children with refractory epilepsy, 33 patients on antiseizure drug monotherapy (valproic acid, levetiracetam, carbamazepine), and 66 age- and sex-matched healthy controls. Commercial ELISA assays were used to quantify Gal-3, N-cadherin (N-cad), and E-cadherin (E-cad) levels.</div></div><div><h3>Results</h3><div>Gal-3 levels were markedly elevated in both epilepsy groups compared with controls (p < 0.001), with the highest concentrations observed in the polytherapy subgroup. In contrast, N-cad expression was reduced among epilepsy patients, although children on polytherapy exhibited relatively higher levels than those on monotherapy. No significant differences were found for E-cad.</div></div><div><h3>Conclusion</h3><div>Elevated Gal-3 is strongly associated with drug resistance, whereas reduced N-cadherin may reflect underlying pathophysiological mechanisms of epilepsy. To our knowledge, this is the first pediatric study evaluating Gal-3 alongside cadherins. These findings highlight their potential as novel biomarkers of disease progression and treatment response, offering a foundation for future biomarker-driven therapeutic strategies in childhood epilepsy.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110916"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146060910","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-28DOI: 10.1016/j.yebeh.2025.110871
Anne Hagemann , Denise Lahr , Pascal Speicher , Heiko Hausfeld , Ingrid Coban , Birgitt Müffelmann , Christian G. Bien , Theodor W. May , Ulrich Specht
Objective
To examine restrictions in daily life perceived by people with newly diagnosed epilepsy (NDE) before participation in a specialized inpatient rehabilitation program and to evaluate the effects of rehabilitation on these perceived restrictions.
Methods
We conducted an explorative study using data from two prospective studies evaluating the efficacy of the rehabilitation program. We analyzed the pre-rehabilitation assessment of the scale “Restrictions in daily life due to epilepsy” of the Performance, Socio-demographic Aspects, Subjective Evaluation (PESOS) questionnaire for patients with NDE (anti-seizure medication treatment for ≤ 1 year) and compared it with those of patients with chronic epilepsy (CE, treatment for > 5 years). Rehabilitation effects were evaluated by comparing the 1-year-follow-up assessments of patients with NDE to those of a control group with a similar epilepsy duration, but without rehabilitation (CGNDE).
Results
Patients with NDE reported the strongest perceived restrictions for “Driving a car/motorcycle” (86.2 % very strongly, vs. 60.2 % in CE, p < 0.001) and “Employment, vocational training/school” (73.1 % vs. 53.1 % in CE, p = 0.067). Some characteristics of patients with NDE (e.g., sex, psychiatric comorbidity) correlated with perceived restrictions in most areas of life, while others showed more specific associations (e.g., financial restrictions with school-leaving qualification). One year after rehabilitation, patients with NDE reported significantly lower perceived restrictions across nearly all areas of life compared to the CGNDE (p < 0.05).
Conclusion
The strongest perceived restrictions occurred in areas of life where even a first seizure imposes objective limitations (driving and employment). One year after rehabilitation, our data indicated a lasting effect of the rehabilitation program.
{"title":"Restrictions due to epilepsy in newly diagnosed patients: Which areas of daily life are affected and how effective is an inpatient rehabilitation program?","authors":"Anne Hagemann , Denise Lahr , Pascal Speicher , Heiko Hausfeld , Ingrid Coban , Birgitt Müffelmann , Christian G. Bien , Theodor W. May , Ulrich Specht","doi":"10.1016/j.yebeh.2025.110871","DOIUrl":"10.1016/j.yebeh.2025.110871","url":null,"abstract":"<div><h3>Objective</h3><div>To examine restrictions in daily life perceived by people with newly diagnosed epilepsy (NDE) before participation in a specialized inpatient rehabilitation program and to evaluate the effects of rehabilitation on these perceived restrictions.</div></div><div><h3>Methods</h3><div>We conducted an explorative study using data from two prospective studies evaluating the efficacy of the rehabilitation program. We analyzed the pre-rehabilitation assessment of the scale “Restrictions in daily life due to epilepsy” of the Performance, Socio-demographic Aspects, Subjective Evaluation (PESOS) questionnaire for patients with NDE (anti-seizure medication treatment for ≤ 1 year) and compared it with those of patients with chronic epilepsy (CE, treatment for > 5 years). Rehabilitation effects were evaluated by comparing the 1-year-follow-up assessments of patients with NDE to those of a control group with a similar epilepsy duration, but without rehabilitation (CG<sub>NDE</sub>).</div></div><div><h3>Results</h3><div>Patients with NDE reported the strongest perceived restrictions for “Driving a car/motorcycle” (86.2 % <em>very strongly</em>, vs. 60.2 % in CE, <em>p</em> < 0.001) and “Employment, vocational training/school” (73.1 % vs. 53.1 % in CE, <em>p</em> = 0.067). Some characteristics of patients with NDE (e.g., sex, psychiatric comorbidity) correlated with perceived restrictions in most areas of life, while others showed more specific associations (e.g., financial restrictions with school-leaving qualification). One year after rehabilitation, patients with NDE reported significantly lower perceived restrictions across nearly all areas of life compared to the CG<sub>NDE</sub> (<em>p</em> < 0.05).</div></div><div><h3>Conclusion</h3><div>The strongest perceived restrictions occurred in areas of life where even a first seizure imposes objective limitations (driving and employment). One year after rehabilitation, our data indicated a lasting effect of the rehabilitation program.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110871"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146073904","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-06DOI: 10.1016/j.yebeh.2025.110865
Elaine T. Kiriakopoulos , Laura Bernstein , Trina Dawson , Lisa Feeley , Barbara C. Jobst , Sarah J. Kaden , Sharon O’Connor
Rationale
HOme-Based Self-management and COgnitive Training CHanges Lives (HOBSCOTCH) is a novel telehealth self-management program aimed at improving cognitive function and quality of life for people with epilepsy. Using a Hub and Spoke model, the HOBSCOTCH Institute at Dartmouth Health partnered with epilepsy center clinics across the U.S. in the HOBSCOTCH Institute Translational Network (HITN) to examine facilitators and barriers to epilepsy self-management program implementation.
Methods
Key informant interviews were conducted with 16 clinician champions from geographically diverse epilepsy centers using a semi-structured guide to explore clinic-level and patient-level factors influencing HOBSCOTCH implementation. Transcripts were analyzed using deductive coding to identify barriers, facilitators, and contextual dynamics shaping program integration.
Results
Findings suggest that the program design, relying on both patient referral to the centralized HOBSCOTCH Institute Hub and onsite Spoke delivery, is well supported by providers. Implementation barriers identified as requiring consideration included technology challenges, language barriers, staffing capacity for program delivery onsite, and readiness of quality improvement systems.
Conclusions
There is increasing recognition of the need to integrate evidence-based self-management into epilepsy clinical care streams. Clinician education and real-world implementation strategies will need to address contextual challenges for broad-based implementation and increased patient access to self-management supports. Access pathways, intervention delivery models, interdisciplinary collaboration, and tailored support will be required to scale epilepsy self-management programs effectively.
原理:基于家庭的自我管理和认知训练改变生活(HOBSCOTCH)是一种新颖的远程医疗自我管理计划,旨在改善癫痫患者的认知功能和生活质量。使用Hub and Spoke模型,达特茅斯卫生学院的HOBSCOTCH研究所与美国各地的癫痫中心诊所合作,在HOBSCOTCH研究所转化网络(HITN)中检查癫痫自我管理项目实施的促进因素和障碍。方法:采用半结构化指南对来自不同地区癫痫中心的16名临床冠军进行关键信息提供者访谈,探讨影响HOBSCOTCH实施的临床层面和患者层面因素。使用演绎编码来分析转录本,以确定形成程序集成的障碍、促进因素和上下文动态。结果:研究结果表明,依靠患者转诊到集中的HOBSCOTCH研究所中心和现场Spoke交付的方案设计得到了提供者的良好支持。需要考虑的实现障碍包括技术挑战、语言障碍、现场项目交付的人员配备能力,以及质量改进系统的准备情况。结论:越来越多的人认识到需要将循证自我管理纳入癫痫临床护理流程。临床医生教育和现实世界的实施战略将需要解决广泛实施的背景挑战,并增加患者获得自我管理支持的机会。为了有效地扩大癫痫自我管理规划的规模,需要获取途径、干预提供模式、跨学科合作和量身定制的支持。
{"title":"Increasing capacity for epilepsy self‐management via a hub and spoke implementation model: Clinician perspectives from epilepsy centers in the United States","authors":"Elaine T. Kiriakopoulos , Laura Bernstein , Trina Dawson , Lisa Feeley , Barbara C. Jobst , Sarah J. Kaden , Sharon O’Connor","doi":"10.1016/j.yebeh.2025.110865","DOIUrl":"10.1016/j.yebeh.2025.110865","url":null,"abstract":"<div><h3>Rationale</h3><div>HOme-Based Self-management and COgnitive Training CHanges Lives (HOBSCOTCH) is a novel telehealth self-management program aimed at improving cognitive function and quality of life for people with epilepsy. Using a Hub and Spoke model, the HOBSCOTCH Institute at Dartmouth Health partnered with epilepsy center clinics across the U.S. in the HOBSCOTCH Institute Translational Network (HITN) to examine facilitators and barriers to epilepsy self-management program implementation.</div></div><div><h3>Methods</h3><div>Key informant interviews were conducted with 16 clinician champions from geographically diverse epilepsy centers using a semi-structured guide to explore clinic-level and patient-level factors influencing HOBSCOTCH implementation. Transcripts were analyzed using deductive coding to identify barriers, facilitators, and contextual dynamics shaping program integration.</div></div><div><h3>Results</h3><div>Findings suggest that the program design, relying on both patient referral to the centralized HOBSCOTCH Institute Hub and onsite Spoke delivery, is well supported by providers. Implementation barriers identified as requiring consideration included technology challenges, language barriers, staffing capacity for program delivery onsite, and readiness of quality improvement systems.</div></div><div><h3>Conclusions</h3><div>There is increasing recognition of the need to integrate evidence-based self-management into epilepsy clinical care streams. Clinician education and real-world implementation strategies will need to address contextual challenges for broad-based implementation and increased patient access to self-management supports. Access pathways, intervention delivery models, interdisciplinary collaboration, and tailored support will be required to scale epilepsy self-management programs effectively.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110865"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145917361","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-31DOI: 10.1016/j.yebeh.2026.110918
Hannah Padilla , Eva C. Alden , Isha Snehal , Jeffrey W. Britton , Lily C. Wong-Kisiel , Elaine C. Wirrell , Kelsey M. Smith
Background
Epilepsy with Eyelid Myoclonia (EEM) is a rare childhood-onset epilepsy syndrome. There is limited data about cognitive function and psychiatric comorbidities in patients with EEM.
Design/Methods
A database of 134 patients with EEM was reviewed for patients who underwent neuropsychological testing. Psychiatric comorbidities and psychometric test scores were identified. Group comparison was performed between those who underwent neuropsychological testing and those who did not. In addition, we evaluated whether clinical factors were associated with IQ score.
Results
Fourteen patients underwent neuropsychological testing (12 females, 85.7%), with a median age at testing of 17 (range 7–22). Median IQ was 79 (range 56–110); 7 patients had below average IQ. Other median results of neuropsychometric measures were: Verbal Comprehension Index 85.5 (range 66–116), Perceptual Reasoning Index or Visual Spatial Index 81.5 (range 67–100), Working Memory Index 77 (range 54–100), Processing Speed Index 84 (range 53–94), and Reading Standardized Scores 84 (range 64–126). Common psychiatric comorbidities were anxiety (n = 10), depression (n = 7), ADHD (n = 6), and autism (n = 2). Those who underwent neuropsychological testing had a younger age of epilepsy onset, longer follow-up at our institution, and were more likely to have myoclonic seizures or psychosis than those who did not undergo neuropsychological testing. No clinical factors were statistically associated with IQ score.
Conclusions
EEM is associated with a wide range of cognitive abilities, with half of our patients having a below average IQ. Psychiatric comorbidities were common. Identifying cognitive impairment and psychiatric comorbidities is crucial to implement appropriate management strategies.
{"title":"Intellectual function and psychiatric comorbidities in patients with epilepsy with eyelid myoclonia","authors":"Hannah Padilla , Eva C. Alden , Isha Snehal , Jeffrey W. Britton , Lily C. Wong-Kisiel , Elaine C. Wirrell , Kelsey M. Smith","doi":"10.1016/j.yebeh.2026.110918","DOIUrl":"10.1016/j.yebeh.2026.110918","url":null,"abstract":"<div><h3>Background</h3><div>Epilepsy with Eyelid Myoclonia (EEM) is a rare childhood-onset epilepsy syndrome. There is limited data about cognitive function and psychiatric comorbidities in patients with EEM.</div></div><div><h3>Design/Methods</h3><div>A database of 134 patients with EEM was reviewed for patients who underwent neuropsychological testing. Psychiatric comorbidities and psychometric test scores were identified. Group comparison was performed between those who underwent neuropsychological testing and those who did not. In addition, we evaluated whether clinical factors were associated with IQ score.</div></div><div><h3>Results</h3><div>Fourteen patients underwent neuropsychological testing (12 females, 85.7%), with a median age at testing of 17 (range 7–22). Median IQ was 79 (range 56–110); 7 patients had below average IQ. Other median results of neuropsychometric measures were: Verbal Comprehension Index 85.5 (range 66–116), Perceptual Reasoning Index or Visual Spatial Index 81.5 (range 67–100), Working Memory Index 77 (range 54–100), Processing Speed Index 84 (range 53–94), and Reading Standardized Scores 84 (range 64–126). Common psychiatric comorbidities were anxiety (n = 10), depression (n = 7), ADHD (n = 6), and autism (n = 2). Those who underwent neuropsychological testing had a younger age of epilepsy onset, longer follow-up at our institution, and were more likely to have myoclonic seizures or psychosis than those who did not undergo neuropsychological testing. No clinical factors were statistically associated with IQ score.</div></div><div><h3>Conclusions</h3><div>EEM is associated with a wide range of cognitive abilities, with half of our patients having a below average IQ. Psychiatric comorbidities were common. Identifying cognitive impairment and psychiatric comorbidities is crucial to implement appropriate management strategies.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110918"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146073929","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-17DOI: 10.1016/j.yebeh.2025.110872
Gizem Güllü , Aylin Bican Demir , İbrahim Hakkı Bora
Objective
Functional/Dissociative Seizures (FDS) are episodic events resembling epileptic seizures but stemming from psychological origins. They often result in misdiagnosis and suboptimal treatment, significantly impairing patients’ quality of life. This study aimed to investigate the clinical and demographic factors associated with short and long term prognosis in FDS.
Methods
The primary variables of interest were seizure outcomes at two horizons: short term (status at 6 months after discharge) and long term (status during the last 12 months within 1–10 years post-diagnosis). We defined seizure outcomes as remission vs persistence and change in seizure frequency from baseline, ascertained from VEM records and standardized clinic/telephone follow up.
Results
The cohort included 147 patients; short term seizure outcomes were available for 144 and long term seizure outcomes for 138 (median follow-up 6 years; range 1–10). At 6 months, 6.9 % were seizure free; at long term follow up, 37.7 % were seizure free. In short term analysis, only early diagnosis (≤1 year) remained significantly associated with remission after Holm adjustment (p = 0.039). Logistic regression showed that early diagnosis (p = 0.018) and higher age at FDS onset (p = 0.026) independently predicted favorable short term seizure outcomes, whereas the presence of family related stressors was associated with poorer prognosis (p = 0.006). In the long term analysis, family related stressors remained significantly associated with poorer seizure outcomes after Holm adjustment (p = 0.007). Logistic regression further showed that longer FDS episodes (≥5 min) were associated with a more favorable long term seizure outcome (p = 0.027), whereas family related stressors continued to independently predict poorer prognosis (p = 0.002).
Conclusions
FDS outcomes are shaped by identifiable psychosocial and clinical factors. Early diagnosis and older age at onset predict favorable short term remission, whereas family related stressors consistently predict poorer outcomes across both time horizons. These findings highlight the prognostic value of early detection and the need to address sustained family related stress in treatment planning.
{"title":"Short and long term seizure outcomes in functional/dissociative seizures: a single center cohort study with 1–10 years of follow up from Türkiye","authors":"Gizem Güllü , Aylin Bican Demir , İbrahim Hakkı Bora","doi":"10.1016/j.yebeh.2025.110872","DOIUrl":"10.1016/j.yebeh.2025.110872","url":null,"abstract":"<div><h3>Objective</h3><div>Functional/Dissociative Seizures (FDS) are episodic events resembling epileptic seizures but stemming from psychological origins. They often result in misdiagnosis and suboptimal treatment, significantly impairing patients’ quality of life. This study aimed to investigate the clinical and demographic factors associated with short and long term prognosis in FDS.</div></div><div><h3>Methods</h3><div>The primary variables of interest were seizure outcomes at two horizons: short term (status at 6 months after discharge) and long term (status during the last 12 months within 1–10 years post-diagnosis). We defined seizure outcomes as remission vs persistence and change in seizure frequency from baseline, ascertained from VEM records and standardized clinic/telephone follow up.</div></div><div><h3>Results</h3><div>The cohort included 147 patients; short term seizure outcomes were available for 144 and long term seizure outcomes for 138 (median follow-up 6 years; range 1–10). At 6 months, 6.9 % were seizure free; at long term follow up, 37.7 % were seizure free. In short term analysis, only early diagnosis (≤1 year) remained significantly associated with remission after Holm adjustment (<em>p</em> = 0.039). Logistic regression showed that early diagnosis (<em>p</em> = 0.018) and higher age at FDS onset (<em>p</em> = 0.026) independently predicted favorable short term seizure outcomes, whereas the presence of family related stressors was associated with poorer prognosis (<em>p</em> = 0.006). In the long term analysis, family related stressors remained significantly associated with poorer seizure outcomes after Holm adjustment (<em>p</em> = 0.007). Logistic regression further showed that longer FDS episodes (≥5 min) were associated with a more favorable long term seizure outcome (<em>p</em> = 0.027), whereas family related stressors continued to independently predict poorer prognosis (<em>p</em> = 0.002).</div></div><div><h3>Conclusions</h3><div>FDS outcomes are shaped by identifiable psychosocial and clinical factors. Early diagnosis and older age at onset predict favorable short term remission, whereas family related stressors consistently predict poorer outcomes across both time horizons. These findings highlight the prognostic value of early detection and the need to address sustained family related stress in treatment planning.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110872"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145974350","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Epilepsy is the most common chronic neurological condition complicating pregnancy. This study aims to understand and explore the needs of pregnant women with epilepsy in India using a concurrent mixed methods approach (Quan-Qual).
Methods
Study was conducted in a comprehensive epilepsy care center of a tertiary care hospital in South of India. After obtaining ethics approval consecutive women with active epilepsy who were currently pregnant were approached and followed till 6 weeks post-partum. Apart from demographic and clinical details, quality of life, self-efficacy, perceived stress, anxiety and social support were estimated. Focus group discussions of 4–6 members facilitated by a trained member of the research team for various stake holders (currently pregnant women, care givers, health care providers, and recently delivered women with good outcomes, and with bad outcomes) were conducted till data saturation. These were recorded, transcribed and coded using both inductive and deductive methods. Quantitative data was processed using STATA ver14.2, Stata Corp, USA and qualitative data using NVIVO, USA. Integration was carried out by merging and triangulating the results.
Results
We recruited 40 pregnant women with epilepsy and the qualitative strand included 28 different stakeholders. Three major themes supported by quantitative and qualitative data emerged a. Epilepsy associated needs (antiseizure medication associated and fragmentation of care) b. Pregnancy associated needs (planned pregnancy) c. Pregnancy and epilepsy associated (anxiety and self-care). Many of these needs were unmet.
Conclusion
Pregnant women with epilepsy in have many unmet needs.
癫痫是妊娠期最常见的慢性神经系统疾病。本研究旨在通过并行混合方法(Quan-Qual)了解和探讨印度癫痫孕妇的需求。方法在印度南部某三级医院癫痫综合护理中心进行研究。在获得伦理批准后,与连续妊娠的活动性癫痫妇女进行接触并随访至产后6周。除了人口统计和临床细节外,还评估了生活质量、自我效能、感知压力、焦虑和社会支持。在研究小组一名训练有素的成员的协助下,对各利益攸关方(目前怀孕的妇女、护理人员、卫生保健提供者和最近分娩的有好结果和坏结果的妇女)进行了4-6人的焦点小组讨论,直到数据饱和。这些记录,转录和编码使用归纳和演绎的方法。定量数据采用STATA ver14.2, STATA Corp, USA,定性数据采用NVIVO, USA。通过合并和三角测量结果进行整合。结果我们招募了40名癫痫孕妇,定性链包括28个不同的利益相关者。定量和定性数据支持的三个主要主题出现了:a.癫痫相关需求(抗癫痫药物相关和护理碎片化)b.妊娠相关需求(计划妊娠)c.妊娠和癫痫相关(焦虑和自我保健)。这些需求中有许多没有得到满足。结论妊娠期癫痫患者有许多未满足的需求。
{"title":"Needs of pregnant women with epilepsy–a mixed methods study","authors":"Rajeswari Aghoram , Pradeep P. Nair , Subitha Lakshminarayanan , Anish Keepanasseril , Zunatha Banu , Rajalakshmy Ramasamy , Priyadarshini Rajendran","doi":"10.1016/j.yebeh.2025.110867","DOIUrl":"10.1016/j.yebeh.2025.110867","url":null,"abstract":"<div><h3>Introduction</h3><div>Epilepsy is the most common chronic neurological condition complicating pregnancy. This study aims to understand and explore the needs of pregnant women with epilepsy in India using a concurrent mixed methods approach (Quan-Qual).</div></div><div><h3>Methods</h3><div>Study was conducted in a comprehensive epilepsy care center of a tertiary care hospital in South of India. After obtaining ethics approval consecutive women with active epilepsy who were currently pregnant were approached and followed till 6 weeks post-partum. Apart from demographic and clinical details, quality of life, self-efficacy, perceived stress, anxiety and social support were estimated. Focus group discussions of 4–6 members facilitated by a trained member of the research team for various stake holders (currently pregnant women, care givers, health care providers, and recently delivered women with good outcomes, and with bad outcomes) were conducted till data saturation. These were recorded, transcribed and coded using both inductive and deductive methods. Quantitative data was processed using STATA ver14.2, Stata Corp, USA and qualitative data using NVIVO, USA. Integration was carried out by merging and triangulating the results.</div></div><div><h3>Results</h3><div>We recruited 40 pregnant women with epilepsy and the qualitative strand included 28 different stakeholders. Three major themes supported by quantitative and qualitative data emerged a. Epilepsy associated needs (antiseizure medication associated and fragmentation of care) b. Pregnancy associated needs (planned pregnancy) c. Pregnancy and epilepsy associated (anxiety and self-care). Many of these needs were unmet.</div></div><div><h3>Conclusion</h3><div>Pregnant women with epilepsy in have many unmet needs.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110867"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145974638","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-22DOI: 10.1016/j.yebeh.2026.110901
Fredrik K Andersson , Bisrat Ezra , Kenney Roy Roodakker , Shala Berntsson , Maria Zetterling , Helena Gauffin , A-M Landtblom
Objective
Ecstatic seizures (EcS) have captured scientific interest due to their potential origin in anterior insular networks, emphasizing the insula’s role in self-processing. Their frequency in epilepsy or insular pathology has not been systematically studied. Present study aimed to examine the frequency and clinical characteristics of EcS in epilepsy patients, and the potential occurrence of ecstatic symptoms in insula tumor patients.
Method
Preformatted questionnaires on symptom reporting were sent to 200 epilepsy patients and 40 with resected insular tumors. Patients reporting EcS-related symptoms underwent in-person interviews. Hospital records, including EEG and imaging, were analyzed.
Seizure-related experiences with supernatural, religious, spiritual, mystical, or ecstatic features were referred to as “numinous-like symptoms” throughout the article.
Results
Interestingly, a variety of rare, numinous-like ictal experiences were found, all of which are discussed in this study. In the epilepsy cohort, 83 patients responded, five (6.0 %) reported symptoms that qualified them for interview and final analysis. In the tumor cohort, 23 patients responded, two (8.7 %) reported relevant symptoms, both with pre-existing epilepsy. During the interviews, we identified EcS (n = 1), ictal out-of-body experiences (OBE) (n = 2), and ictal sensed presence (SenP) (n = 5); one patient experienced both SenP and OBE. Three SenP patients had seizure origin in the right hemisphere: two had resected tumors in the temporo-insular region and one had mesial temporal sclerosis. The EcS patient had aphasia as an early seizure symptom and left-sided temporal interictal epileptiform activity. The remaining patients had less distinct investigational results.
Conclusion
Our findings indicate that seizure-related numinous-like experiences are not uncommon and should be actively assessed, given the difficulty and reluctance of patients to speak about them, and their relevance for evaluating seizure freedom and differential diagnoses. Neuroscientifically, these phenomena offer insight into consciousness: EcS and OBE occupy distinct nodes in self-processing networks, whereas SenP requires further cognitive, psychological, and phenomenological analysis to guide future neurobiological research.
{"title":"Numinous-like symptoms in epilepsy and/or insular tumors: A hospital cohort study","authors":"Fredrik K Andersson , Bisrat Ezra , Kenney Roy Roodakker , Shala Berntsson , Maria Zetterling , Helena Gauffin , A-M Landtblom","doi":"10.1016/j.yebeh.2026.110901","DOIUrl":"10.1016/j.yebeh.2026.110901","url":null,"abstract":"<div><h3>Objective</h3><div>Ecstatic seizures (EcS) have captured scientific interest due to their potential origin in anterior insular networks, emphasizing the insula’s role in self-processing. Their frequency in epilepsy or insular pathology has not been systematically studied. Present study aimed to examine the frequency and clinical characteristics of EcS in epilepsy patients, and the potential occurrence of ecstatic symptoms in insula tumor patients.</div></div><div><h3>Method</h3><div>Preformatted questionnaires on symptom reporting were sent to 200 epilepsy patients and 40 with resected insular tumors. Patients reporting EcS-related symptoms underwent in-person interviews. Hospital records, including EEG and imaging, were analyzed.</div><div>Seizure-related experiences with supernatural, religious, spiritual, mystical, or ecstatic features were referred to as “numinous-like symptoms” throughout the article.</div></div><div><h3>Results</h3><div>Interestingly, a variety of rare, numinous-like ictal experiences were found, all of which are discussed in this study. In the epilepsy cohort, 83 patients responded, five (6.0 %) reported symptoms that qualified them for interview and final analysis. In the tumor cohort, 23 patients responded, two (8.7 %) reported relevant symptoms, both with pre-existing epilepsy. During the interviews, we identified EcS (n = 1), ictal out-of-body experiences (OBE) (n = 2), and ictal sensed presence (SenP) (n = 5); one patient experienced both SenP and OBE. Three SenP patients had seizure origin in the right hemisphere: two had resected tumors in the temporo-insular region and one had mesial temporal sclerosis. The EcS patient had aphasia as an early seizure symptom and left-sided temporal interictal epileptiform activity. The remaining patients had less distinct investigational results.</div></div><div><h3>Conclusion</h3><div>Our findings indicate that seizure-related numinous-like experiences are not uncommon and should be actively assessed, given the difficulty and reluctance of patients to speak about them, and their relevance for evaluating seizure freedom and differential diagnoses. Neuroscientifically, these phenomena offer insight into consciousness: EcS and OBE occupy distinct nodes in self-processing networks, whereas SenP requires further cognitive, psychological, and phenomenological analysis to guide future neurobiological research.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110901"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146035043","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 2026-03-01Epub Date: 2026-01-31DOI: 10.1016/j.yebeh.2026.110921
Kennedy R. Geenen , Samantha V. Yap , Lydia Tsega , Steven Cantrell , Patricia L. Bruno , Elizabeth A. Thiele
Aim
The goal of this study was to assess the efficacy and tolerability of the Cantrell Notch Filtering soft contact lens as a treatment for patients with Sunflower syndrome.
Methods
A questionnaire was distributed to patients with Sunflower syndrome that were being treated with the Cantrell Notch Filtering contact lenses. The survey was hosted on REDCap, and covered topics pertaining to the respondent’s history of Sunflower syndrome, including frequency of seizures, tolerability of the lenses, and the perceived benefit of the lenses with regard to reduction of handwaving episodes.
Results
Nineteen people participated in this study. Sixteen of the 19 respondents provided numerical data regarding the frequency of handwaving episodes with and without contact lenses. At the time of survey completion, the average length of time that patients reported wearing the contact lenses was 11.5 months (range: 1 week-2 years 6 months). There was an average 72.9% reduction in handwaving episodes with the use of the contact lenses. Many respondents were able to reduce the use of other non-pharmacological interventions, such as hats and sunglasses, while wearing the contact lenses. However, 10 respondents (52.6%) reported difficulty with tolerability of the contact lenses, including stinging, burning, and color distortion. Of note, these contact lenses filter light between 250 and 650 nm, compared to a Zeiss Z1 lens which filters light between 550 and 700 nm.
Conclusion
The Cantrell Notch Filtering contact lens for Sunflower syndrome may be a beneficial non-pharmacological treatment option for some patients with Sunflower syndrome, although many patients have difficulty with tolerability.
{"title":"Efficacy and tolerability of blue-tinted contact lenses in the treatment of Sunflower syndrome: A questionnaire-based study","authors":"Kennedy R. Geenen , Samantha V. Yap , Lydia Tsega , Steven Cantrell , Patricia L. Bruno , Elizabeth A. Thiele","doi":"10.1016/j.yebeh.2026.110921","DOIUrl":"10.1016/j.yebeh.2026.110921","url":null,"abstract":"<div><h3>Aim</h3><div>The goal of this study was to assess the efficacy and tolerability of the Cantrell Notch Filtering soft contact lens as a treatment for patients with Sunflower syndrome.</div></div><div><h3>Methods</h3><div>A questionnaire was distributed to patients with Sunflower syndrome that were being treated with the Cantrell Notch Filtering contact lenses. The survey was hosted on REDCap, and covered topics pertaining to the respondent’s history of Sunflower syndrome, including frequency of seizures, tolerability of the lenses, and the perceived benefit of the lenses with regard to reduction of handwaving episodes.</div></div><div><h3>Results</h3><div>Nineteen people participated in this study. Sixteen of the 19 respondents provided numerical data regarding the frequency of handwaving episodes with and without contact lenses. At the time of survey completion, the average length of time that patients reported wearing the contact lenses was 11.5 months (range: 1 week-2 years 6 months). There was an average 72.9% reduction in handwaving episodes with the use of the contact lenses. Many respondents were able to reduce the use of other non-pharmacological interventions, such as hats and sunglasses, while wearing the contact lenses. However, 10 respondents (52.6%) reported difficulty with tolerability of the contact lenses, including stinging, burning, and color distortion. Of note, these contact lenses filter light between 250 and 650 nm, compared to a Zeiss Z1 lens which filters light between 550 and 700 nm.</div></div><div><h3>Conclusion</h3><div>The Cantrell Notch Filtering contact lens for Sunflower syndrome may be a beneficial non-pharmacological treatment option for some patients with Sunflower syndrome, although many patients have difficulty with tolerability.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"176 ","pages":"Article 110921"},"PeriodicalIF":2.3,"publicationDate":"2026-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146074088","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}