Pub Date : 2026-05-01Epub Date: 2026-02-23DOI: 10.1016/j.yebeh.2026.110919
Jade-Jocelyne Zouki , Hua Ye , Alfred Pak-Kwan Lo , Janet Bondarenko , Catherine George , David J Berlowitz , Rod Duncan , Cathrine Mihalopoulos , Sabine Braat , Terence J O’Brien , Dennis Velakoulis , Patrick Kwan , Roger Mulder , Mark Cook , Ozayr Ameen , Wendyl D’Souza , James Olver , Toby Winton-Brown , Richard A Kanaan
Functional/Dissociative Seizures (FDS) are presentations that appear like epileptic seizures but occur without abnormal cortical electrical activity in the brain. Abnormal respiratory patterns, particularly hyperventilation, have been frequently observed in people with FDS, suggesting this may be a potential therapeutic target. This scoping review aimed to explore the various applications of breathing techniques in the treatment of FDS, synthesizing evidence from clinical and case-based articles to provide a comprehensive overview of this therapeutic modality. Systematic searches were conducted in MEDLINE Complete, Embase, and PsycINFO databases to identify published case reports, case series, clinical trials, clinician perspectives, and book chapters reporting on the use of breathing as a primary or adjunct intervention in patients with diagnosed FDS. Of the 4123 articles identified, 28 were included in the final synthesis (18 = case reports/series; 10 = clinical trials). The majority of articles integrated breathwork within broader psychotherapeutic approaches, with only two using it as a standalone intervention. Findings provide preliminary support for the feasibility and potential benefit of breathing techniques in FDS management; however, the evidence remains limited, heterogeneous, and indirect. Further controlled studies are needed to clarify the mechanisms and efficacy of breathwork interventions for FDS.
{"title":"The therapeutic effect of breathing interventions for functional seizures: A scoping review","authors":"Jade-Jocelyne Zouki , Hua Ye , Alfred Pak-Kwan Lo , Janet Bondarenko , Catherine George , David J Berlowitz , Rod Duncan , Cathrine Mihalopoulos , Sabine Braat , Terence J O’Brien , Dennis Velakoulis , Patrick Kwan , Roger Mulder , Mark Cook , Ozayr Ameen , Wendyl D’Souza , James Olver , Toby Winton-Brown , Richard A Kanaan","doi":"10.1016/j.yebeh.2026.110919","DOIUrl":"10.1016/j.yebeh.2026.110919","url":null,"abstract":"<div><div>Functional/Dissociative Seizures (FDS) are presentations that appear like epileptic seizures but occur without abnormal cortical electrical activity in the brain. Abnormal respiratory patterns, particularly hyperventilation, have been frequently observed in people with FDS, suggesting this may be a potential therapeutic target. This scoping review aimed to explore the various applications of breathing techniques in the treatment of FDS, synthesizing evidence from clinical and case-based articles to provide a comprehensive overview of this therapeutic modality. Systematic searches were conducted in MEDLINE Complete, Embase, and PsycINFO databases to identify published case reports, case series, clinical trials, clinician perspectives, and book chapters reporting on the use of breathing as a primary or adjunct intervention in patients with diagnosed FDS. Of the 4123 articles identified, 28 were included in the final synthesis (18 = case reports/series; 10 = clinical trials). The majority of articles integrated breathwork within broader psychotherapeutic approaches, with only two using it as a standalone intervention. Findings provide preliminary support for the feasibility and potential benefit of breathing techniques in FDS management; however, the evidence remains limited, heterogeneous, and indirect. Further controlled studies are needed to clarify the mechanisms and efficacy of breathwork interventions for FDS.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110919"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147282906","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 : 2026-05-01Epub Date: 2026-02-23DOI: 10.1016/j.yebeh.2026.110961
Lucretia Long , Rachel Ernst , Sheri Hart , Sarita Maturu
Objectives
Over the past 20 years, the Knowledge of Women’s Issues in Epilepsy questionnaire II (KOWIE II) has been used globally to evaluate practitioner awareness of issues associated with female patients with epilepsy. Given recent advances, incorporating new data and current guidelines into a knowledge assessment questionnaire is warranted. The purpose of this study is to update and revise the original KOWIE II questionnaire and confirm content validity.
Methods
Following a literature review to define constructs associated with women with epilepsy (WWE), an updated version of the original KOWIE II questionnaire was developed. The 13-item revised KOWIE (rKOWIE) II questionnaire was distributed electronically to subject matter experts who were asked to critically review and rate the items on a Likert scale. Experts were also encouraged to provide qualitative feedback via a free-text field to inform refinement of item content and wording.
Results
Nine experts completed the rKOWIE II validity inquiry for the final questionnaire content. The overall CVI-S was 0.97, with all items scoring CVI-I > 0.80.
Discussion
Content validity was confirmed for all items of the rKOWIE II. The updated version can be used in clinical research and as an educational tool for healthcare providers. By strengthening provider knowledge and practice, the questionnaire has the potential to positively influence health outcomes among care partners and women with epilepsy.
{"title":"Validating the revised knowledge of women’s issues and epilepsy ii questionnaire (rKOWIE): Bridging past and present perspectives","authors":"Lucretia Long , Rachel Ernst , Sheri Hart , Sarita Maturu","doi":"10.1016/j.yebeh.2026.110961","DOIUrl":"10.1016/j.yebeh.2026.110961","url":null,"abstract":"<div><h3>Objectives</h3><div>Over the past 20 years, the Knowledge of Women’s Issues in Epilepsy questionnaire II (KOWIE II) has been used globally to evaluate practitioner awareness of issues associated with female patients with epilepsy. Given recent advances, incorporating new data and current guidelines into a knowledge assessment questionnaire is warranted. The purpose of this study is to update and revise the original KOWIE II questionnaire and confirm content validity.</div></div><div><h3>Methods</h3><div>Following a literature review to define constructs associated with women with epilepsy (WWE), an updated version of the original KOWIE II questionnaire was developed. The 13-item revised KOWIE (<em>r</em>KOWIE) II questionnaire was distributed electronically to subject matter experts who were asked to critically review and rate the items on a Likert scale. Experts were also encouraged to provide qualitative feedback via a free-text field to inform refinement of item content and wording.</div></div><div><h3>Results</h3><div>Nine experts completed the <em>r</em>KOWIE II validity inquiry for the final questionnaire content. The overall CVI-S was 0.97, with all items scoring CVI-I > 0.80.</div></div><div><h3>Discussion</h3><div>Content validity was confirmed for all items of the <em>r</em>KOWIE II. The updated version can be used in clinical research and as an educational tool for healthcare providers. By strengthening provider knowledge and practice, the questionnaire has the potential to positively influence health outcomes among care partners and women with epilepsy.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110961"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147282898","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 : 2026-05-01Epub Date: 2026-02-21DOI: 10.1016/j.yebeh.2026.110966
Hope M. Reecher , Sydney E. Park , Avantika Singh , Irene Kim , Sean M. Lew , Jennifer I. Koop
Rationale
A primary goal of neuropsychological evaluation is to identify cognitive strengths and weaknesses to guide interventions. The Cognitive Lateralization Index (CLRI) has been established as a way to quantify lateralization of dysfunction in pediatric epilepsy surgical cohorts, but not yet in nonsurgical cohorts. This study examined differences in cognitive lateralization between surgical and nonsurgical pediatric epilepsy patients.
Methods
Retrospective review was completed for surgical or nonsurgical epilepsy patients under age 18 with sufficient neuropsychological data for CLRI calculation. Hemispheric seizure lateralization was determined by scalp EEG for nonsurgical, and, if available, by stereotactic EEG in surgical patients. Seizure type was determined by seizure semiology. Primary analyses included frequency, descriptive, and X2 tests.
Results
A total of 82 patients were included (36 female, 46 male) with 35 surgical and 47 nonsurgical patients. Of patients with a known etiology, 65.9% were structural. Surgical patients had predominantly focal epilepsy (88.6%). Most patients had a mild degree of lateralization (45.1%). Most had a nondominant CLRI (59.8%) versus a nonlateralized CLRI (8.5%). Patients with right hemispheric and generalized/multifocal lateralized seizures more often had a nondominant CLRI. Surgical versus nonsurgical analyses revealed no significant difference between the degree of lateralization (X2 (3,82) = 1.34, p = 0.72), nor between the 3 CLRI categories, (X2 (2,82) = 3.20, p = 0.20).
Conclusions
This study establishes the generalizability of the CLRI to nonsurgical epilepsy patients and emphasizes the CLRI’s ability to detect lateralized profiles in children with epilepsy. Despite significant differences in seizure lateralization, there were no significant differences in cognitive lateralization between surgical and nonsurgical patients.
基本原理:神经心理学评估的一个主要目标是识别认知优势和劣势,以指导干预。认知偏侧化指数(CLRI)已被确立为量化小儿癫痫手术队列中功能障碍偏侧化的一种方法,但尚未应用于非手术队列。本研究探讨了手术和非手术儿童癫痫患者认知偏侧的差异。方法:回顾性分析18岁以下的手术或非手术癫痫患者,这些患者有足够的神经心理学数据来计算CLRI。非手术患者用头皮脑电图确定癫痫半球偏侧,手术患者用立体定向脑电图确定。发作类型由发作符号学确定。主要分析包括频率、描述性和X2检验。结果:共纳入82例患者(女性36例,男性46例),其中手术35例,非手术47例。在已知病因的患者中,65.9%是结构性的。手术患者以局灶性癫痫为主(88.6%)。大多数患者有轻度偏侧(45.1%)。大多数为非显性CLRI(59.8%),而非侧化CLRI(8.5%)。右半球和全身性/多灶性偏侧性癫痫患者更常发生非显性CLRI。手术与非手术分析显示,侧化程度之间无显著差异(X2 (3,82) = 1.34, p = 0.72),三种CLRI类型之间也无显著差异(X2 (2,82) = 3.20, p = 0.20)。结论:本研究确立了CLRI对非手术癫痫患者的普遍性,并强调了CLRI检测癫痫患儿侧化特征的能力。尽管在癫痫发作侧化方面存在显著差异,但在认知侧化方面,手术和非手术患者没有显著差异。
{"title":"Identification of lateralized cognitive profiles in surgical and nonsurgical pediatric epilepsy patients using the Cognitive Lateralization Rating Index","authors":"Hope M. Reecher , Sydney E. Park , Avantika Singh , Irene Kim , Sean M. Lew , Jennifer I. Koop","doi":"10.1016/j.yebeh.2026.110966","DOIUrl":"10.1016/j.yebeh.2026.110966","url":null,"abstract":"<div><h3>Rationale</h3><div>A primary goal of neuropsychological evaluation is to identify cognitive strengths and weaknesses to guide interventions. The Cognitive Lateralization Index (CLRI) has been established as a way to quantify lateralization of dysfunction in pediatric epilepsy surgical cohorts, but not yet in nonsurgical cohorts. This study examined differences in cognitive lateralization between surgical and nonsurgical pediatric epilepsy patients.</div></div><div><h3>Methods</h3><div>Retrospective review was completed for surgical or nonsurgical epilepsy patients under age 18 with sufficient neuropsychological data for CLRI calculation. Hemispheric seizure lateralization was determined by scalp EEG for nonsurgical, and, if available, by stereotactic EEG in surgical patients. Seizure type was determined by seizure semiology. Primary analyses included frequency, descriptive, and <em>X<sup>2</sup></em> tests.</div></div><div><h3>Results</h3><div>A total of 82 patients were included (36 female, 46 male) with 35 surgical and 47 nonsurgical patients. Of patients with a known etiology, 65.9% were structural. Surgical patients had predominantly focal epilepsy (88.6%). Most patients had a mild degree of lateralization (45.1%). Most had a nondominant CLRI (59.8%) versus a nonlateralized CLRI (8.5%). Patients with right hemispheric and generalized/multifocal lateralized seizures more often had a nondominant CLRI. Surgical versus nonsurgical analyses revealed no significant difference between the degree of lateralization (<em>X<sup>2</sup></em> (3,82) = 1.34, <em>p</em> = 0.72), nor between the 3 CLRI categories, (<em>X<sup>2</sup></em> (2,82) = 3.20, <em>p</em> = 0.20).</div></div><div><h3>Conclusions</h3><div>This study establishes the generalizability of the CLRI to nonsurgical epilepsy patients and emphasizes the CLRI’s ability to detect lateralized profiles in children with epilepsy. Despite significant differences in seizure lateralization, there were no significant differences in cognitive lateralization between surgical and nonsurgical patients.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110966"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147270092","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 : 2026-05-01Epub Date: 2026-02-27DOI: 10.1016/j.yebeh.2026.110969
Radheshyam Stepponat , Marc Berger , Laurin Schäfer , Laura Flamm , Benjamin Eisinger , Mehmet S. Yildirim , Kathrin Kollndorfer , Ekaterina Pataraia , Silvia Bonelli-Nauer , Gregor Kasprian , Florian Ph.S. Fischmeister
Background
Task-based functional MRI (fMRI) is widely used to map language networks and guide presurgical planning. However, the validity of activation maps depends critically on patients’ engagement and task performance, which are rarely assessed directly during scanning. Failure to differentiate true atypical language organization from poor task execution may reduce the reliability of clinical fMRI. Complementary use of both task-positive activations (language network, LN) and task-negative activations (default mode network, DMN) may provide an objective means to approximate task compliance.
Methods
We retrospectively analysed task-based fMRI data from 43 patients with temporal lobe epilepsy (TLE) and 25 healthy controls. Each participant performed two language paradigms (sentence comprehension, verb generation). Engagement indices were defined based on suprathreshold activation within LN and DMN masks. For each task, participants were classified as fully compliant, partially compliant, or non-compliant. These indices were further combined into task specific compliance measures. Neuropsychological attention performance was compared across engagement categories to test for linear associations between functional engagement and cognitive capacity.
Results
Healthy controls showed significantly higher compliance than TLE patients for the cognitively more demanding sentence comprehension task (p = 0.008), but not for verb generation. LN engagement proved to be the most robust predictor of attentional performance, with higher engagement associated with better outcomes in the d2 test, TMT-A, TMT-B, and the overall attention score (all p < 0.05). Crucially, the association with the overall attention score remained statistically significant after Bonferroni correction (p = 0.002). A significant linear trend was observed (p = 0.032), where attention scores decreased progressively from fully compliant to non-compliant groups. DMN engagement showed weaker, exploratory trends, suggesting it serves as a complementary “safety net” rather than a primary predictor.
Conclusion
Our findings demonstrate that network-based engagement indices derived from both LN activation and DMN suppression provide a practical approximation of task engagement during clinical fMRI. While LN engagement emerged as the strongest predictor of attention, DMN suppression might provide a qualitative safeguard against false negatives, helping to distinguish remediable “state” lapses in engagement from “trait” functional reorganization. Incorporating both task-positive and task-negative markers into clinical workflows may improve the reliability of language mapping, enabling real-time identification of unsuccessful runs and ultimately supporting presurgical planning.
{"title":"A network-based approach to assess task-compliance in fMRI","authors":"Radheshyam Stepponat , Marc Berger , Laurin Schäfer , Laura Flamm , Benjamin Eisinger , Mehmet S. Yildirim , Kathrin Kollndorfer , Ekaterina Pataraia , Silvia Bonelli-Nauer , Gregor Kasprian , Florian Ph.S. Fischmeister","doi":"10.1016/j.yebeh.2026.110969","DOIUrl":"10.1016/j.yebeh.2026.110969","url":null,"abstract":"<div><h3>Background</h3><div>Task-based functional MRI (fMRI) is widely used to map language networks and guide presurgical planning. However, the validity of activation maps depends critically on patients’ engagement and task performance, which are rarely assessed directly during scanning. Failure to differentiate true atypical language organization from poor task execution may reduce the reliability of clinical fMRI. Complementary use of both task-positive activations (language network, LN) and task-negative activations (default mode network, DMN) may provide an objective means to approximate task compliance.</div></div><div><h3>Methods</h3><div>We retrospectively analysed task-based fMRI data from 43 patients with temporal lobe epilepsy (TLE) and 25 healthy controls. Each participant performed two language paradigms (sentence comprehension, verb generation). Engagement indices were defined based on suprathreshold activation within LN and DMN masks. For each task, participants were classified as fully compliant, partially compliant, or non-compliant. These indices were further combined into task specific compliance measures. Neuropsychological attention performance was compared across engagement categories to test for linear associations between functional engagement and cognitive capacity.</div></div><div><h3>Results</h3><div>Healthy controls showed significantly higher compliance than TLE patients for the cognitively more demanding sentence comprehension task (p = 0.008), but not for verb generation. LN engagement proved to be the most robust predictor of attentional performance, with higher engagement associated with better outcomes in the d2 test, TMT-A, TMT-B, and the overall attention score (all p < 0.05). Crucially, the association with the overall attention score remained statistically significant after Bonferroni correction (p = 0.002). A significant linear trend was observed (p = 0.032), where attention scores decreased progressively from fully compliant to non-compliant groups. DMN engagement showed weaker, exploratory trends, suggesting it serves as a complementary “safety net” rather than a primary predictor.</div></div><div><h3>Conclusion</h3><div>Our findings demonstrate that network-based engagement indices derived from both LN activation and DMN suppression provide a practical approximation of task engagement during clinical fMRI. While LN engagement emerged as the strongest predictor of attention, DMN suppression might provide a qualitative safeguard against false negatives, helping to distinguish remediable “state” lapses in engagement from “trait” functional reorganization. Incorporating both task-positive and task-negative markers into clinical workflows may improve the reliability of language mapping, enabling real-time identification of unsuccessful runs and ultimately supporting presurgical planning.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110969"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147321519","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 : 2026-05-01Epub Date: 2026-02-23DOI: 10.1016/j.yebeh.2026.110957
Lucy Eaves , Markus Reuber , Jane Simpson
Background
Previous research in individuals with epilepsy suggests that some of the physical, disgust-eliciting manifestations of seizures may trigger self-disgust. Self-disgust has previously been linked to experiences of emotional neglect and trauma, especially in childhood. Both these are more common in people with functional dissociative seizures than in those with epilepsy. Hence, this study aimed to understand the experience of self-disgust in people with functional/dissociative seizures (FDS).
Methods
This qualitative study used interpretative phenomenological analysis (IPA). Following initial screening using the Self-Disgust Rating Scale, purposive sampling was used to recruit eight eligible participants with high levels of self-disgust to participate in individual semi-structured interviews.
Results
In the larger sample (n = 108), 85.2% of participants reported high levels of self-disgust. The exploration of the phenomenology of self-disgust in a group of high scoring individuals produced four themes: ‘understanding the origin of self-disgust as based in rejection’, ‘experiencing self-disgust as intense and inescapable’, ‘understanding the relationship between self-disgust and FDS’ and ‘suppression and seclusion − attempting to cope with self-disgust’.
Conclusions
Self-disgust may be highly relevant to a subpopulation of pwFDS and may arise from the internalisation of traumatic, seizure-related experiences. While attempts to reduce self-disgust may provide short-term relief, these could reinforce and maintain the underlying cognitive-affective state. Although often under-recognised, it is important to assess for the presence of self-disgust in clinical settings and to offer additional support around engagement and therapeutic alliance development. A number of therapeutic and systemic approaches to address high levels of self-disgust are discussed.
{"title":"An interpretative phenomenological analysis of the experience of self-disgust in people with functional/dissociative seizures","authors":"Lucy Eaves , Markus Reuber , Jane Simpson","doi":"10.1016/j.yebeh.2026.110957","DOIUrl":"10.1016/j.yebeh.2026.110957","url":null,"abstract":"<div><h3>Background</h3><div>Previous research in individuals with epilepsy suggests that some of the physical, disgust-eliciting manifestations of seizures may trigger self-disgust. Self-disgust has previously been linked to experiences of emotional neglect and trauma, especially in childhood. Both these are more common in people with functional dissociative seizures than in those with epilepsy. Hence, this study aimed to understand the experience of self-disgust in people with functional/dissociative seizures (FDS).</div></div><div><h3>Methods</h3><div>This qualitative study used interpretative phenomenological analysis (IPA). Following initial screening using the Self-Disgust Rating Scale, purposive sampling was used to recruit eight eligible participants with high levels of self-disgust to participate in individual semi-structured interviews.</div></div><div><h3>Results</h3><div>In the larger sample (<em>n =</em> 108), 85.2% of participants reported high levels of self-disgust. The exploration of the phenomenology of self-disgust in a group of high scoring individuals produced four themes: ‘understanding the origin of self-disgust as based in rejection’, ‘experiencing self-disgust as intense and inescapable’, ‘understanding the relationship between self-disgust and FDS’ and ‘suppression and seclusion − attempting to cope with self-disgust’.</div></div><div><h3>Conclusions</h3><div>Self-disgust may be highly relevant to a subpopulation of pwFDS and may arise from the internalisation of traumatic, seizure-related experiences. While attempts to reduce self-disgust may provide short-term relief, these could reinforce and maintain the underlying cognitive-affective state. Although often under-recognised, it is important to assess for the presence of self-disgust in clinical settings and to offer additional support around engagement and therapeutic alliance development. A number of therapeutic and systemic approaches to address high levels of self-disgust are discussed.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110957"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147282819","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 : 2026-05-01Epub Date: 2026-02-19DOI: 10.1016/j.yebeh.2025.110879
C. Helmstaedter , KA. Alfstad , E. Dahl-Hansen , O. Henning , C.Johannessen Landmark , R. Kälviäinen , EB. Kyte , P. Marusic , M. Mula , S. Myren , J. Peltola , G. Rubboli , A. Strzelczyk , S. Jozwiak , MI. Lossius
{"title":"Proceedings from ERN EpiCARE “BEYOND SEIZURES” meeting, Aalesund, Norway, May the 27th. Advancing holistic care for rare and complex epilepsies in adults","authors":"C. Helmstaedter , KA. Alfstad , E. Dahl-Hansen , O. Henning , C.Johannessen Landmark , R. Kälviäinen , EB. Kyte , P. Marusic , M. Mula , S. Myren , J. Peltola , G. Rubboli , A. Strzelczyk , S. Jozwiak , MI. Lossius","doi":"10.1016/j.yebeh.2025.110879","DOIUrl":"10.1016/j.yebeh.2025.110879","url":null,"abstract":"","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110879"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"146257814","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 : 2026-05-01Epub Date: 2026-02-26DOI: 10.1016/j.yebeh.2026.110967
Mirja Steinbrenner , Mohammed Abdelrhman , Theodor W. May , Luise Graf , Hien Giang Do , Le Trang Nguyen , Eric Hahn , Thi Minh Tam Ta , Martin Holtkamp
Introduction
Attitudes toward people with epilepsy (PWE) have improved over recent decades, especially in high-income countries including Germany. However, this trend is less pronounced in low-income countries. This study aims to assess and compare attitudes toward PWE in two large ethnocultural minority groups in Berlin: Arabic and Vietnamese residents.
Methods
Residents of Berlin aged 18 years or older, born and raised in selected Arabic countries or Vietnam were invited to participate in a survey. We used a preliminary version of the standardized “Scales of Attitudes toward People with Epilepsy” (SAPE) questionnaire with scales on Social Distance, Stereotypes, Personal Concerns, and Emotional Reactions to PWE differentiated by Fear, Anger, and Pity/Compassion. In addition, the Caveness Questions (CQ) about personal experience with epilepsy and knowledge about epilepsy were assessed. Limiting comparability with previous literature and overall validity of findings was the use of a preliminary version of SAPE and the lack of formal validation of Vietnamese and Arabic translations of SAPE.
Results
A total of 297 participants were interviewed; 15 of those had never heard of epilepsy and were excluded from the analysis. Eventually, questionnaires of 133 Arabic and 149 Vietnamese interviewees (female sex, 43 vs. 68%; mean age, 34.8 ± 9.7 vs. 34.0 ± 12.4 years; duration of stay in Germany, 6.0 ± 5.1 vs. 7.9 ± 9.4 years) were considered. Multivariable Generalized Linear Model (GLM) analyses showed that Arabic compared to Vietnamese participants had higher objections to having one’s own children play with PWE, but less likely deemed epilepsy as a mental disease; furthermore, they had lower objections to employment of PWE. In the SAPE scales, Arabic interviewees scored significantly lower for the ‘Social Distance’ and the ‘Emotional Reactions: Fear’ scale. A strong predictor for more positive attitudes across almost all SAPE subscales in both groups was higher education.
Conclusion
Arabic and Vietnamese residents of Berlin differed in some specific facets of the attitude toward PWE. Attitudes were generally more positive than in surveys done in several Arabic countries and Vietnam. Higher levels of education predicted more positive attitudes in both groups calling for specific knowledge transfer to the general population on epilepsy and persons affected.
{"title":"Attitudes toward people with epilepsy among Arabic and Vietnamese residents of Berlin – A cross-cultural comparison","authors":"Mirja Steinbrenner , Mohammed Abdelrhman , Theodor W. May , Luise Graf , Hien Giang Do , Le Trang Nguyen , Eric Hahn , Thi Minh Tam Ta , Martin Holtkamp","doi":"10.1016/j.yebeh.2026.110967","DOIUrl":"10.1016/j.yebeh.2026.110967","url":null,"abstract":"<div><h3>Introduction</h3><div>Attitudes toward people with epilepsy (PWE) have improved over recent decades, especially in high-income countries including Germany. However, this trend is less pronounced in low-income countries. This study aims to assess and compare attitudes toward PWE in two large ethnocultural minority groups in Berlin: Arabic and Vietnamese residents.</div></div><div><h3>Methods</h3><div>Residents of Berlin aged 18 years or older, born and raised in selected Arabic countries or Vietnam were invited to participate in a survey. We used a preliminary version of the standardized “Scales of Attitudes toward People with Epilepsy” (SAPE) questionnaire with scales on Social Distance, Stereotypes, Personal Concerns, and Emotional Reactions to PWE differentiated by Fear, Anger, and Pity/Compassion. In addition, the Caveness Questions (CQ) about personal experience with epilepsy and knowledge about epilepsy were assessed. Limiting comparability with previous literature and overall validity of findings was the use of a preliminary version of SAPE and the lack of formal validation of Vietnamese and Arabic translations of SAPE.</div></div><div><h3>Results</h3><div>A total of 297 participants were interviewed; 15 of those had never heard of epilepsy and were excluded from the analysis. Eventually, questionnaires of 133 Arabic and 149 Vietnamese interviewees (female sex, 43 vs. 68%; mean age, 34.8 ± 9.7 vs. 34.0 ± 12.4 years; duration of stay in Germany, 6.0 ± 5.1 vs. 7.9 ± 9.4 years) were considered. Multivariable Generalized Linear Model (GLM) analyses showed that Arabic compared to Vietnamese participants had higher objections to having one’s own children play with PWE, but less likely deemed epilepsy as a mental disease; furthermore, they had lower objections to employment of PWE. In the SAPE scales, Arabic interviewees scored significantly lower for the ‘Social Distance’ and the ‘Emotional Reactions: Fear’ scale. A strong predictor for more positive attitudes across almost all SAPE subscales in both groups was higher education.</div></div><div><h3>Conclusion</h3><div>Arabic and Vietnamese residents of Berlin differed in some specific facets of the attitude toward PWE. Attitudes were generally more positive than in surveys done in several Arabic countries and Vietnam. Higher levels of education predicted more positive attitudes in both groups calling for specific knowledge transfer to the general population on epilepsy and persons affected.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110967"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147316903","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 : 2026-05-01Epub Date: 2026-02-24DOI: 10.1016/j.yebeh.2026.110965
Guang Ni, Dong Meng
<div><h3>Background</h3><div>Attention-deficit/hyperactivity disorder(ADHD)is the most common neuropsychiatric comorbidity in children with epilepsy and occurs at prevalence rates 2.5 to 5.5 times higher in children with epilepsy than the general <span><span>population. To</span><svg><path></path></svg></span> date,the largest comprehensive <em>meta</em>-analysis(46 studies)estimated the pooled ADHD prevalence among children with epilepsy to be almost one-third(30.7%),with a greater proportion of the inattentive subtype.Children with epilepsy who also have ADHD have poorer seizure outcomes,lower quality of life,academic underachievement,and increased healthcare utilization.Despite being present in so many of them,ADHD frequently remains underdiagnosed in children with epilepsy because of symptom overlap,diagnostic complexity,and the lack of standardized screening <span><span>protocols. In</span><svg><path></path></svg></span> addition,both the validity of screening instruments and risk factors associated with comorbid ADHD need to be studied to develop ways to diagnose and treat ADHD in this vulnerable population.</div></div><div><h3>Objective</h3><div>To assess the diagnostic accuracy and discriminant validity of ADHD screening tools for children with epilepsy and comorbid ADHD and to conduct a systematic review and <em>meta</em>-analysis on the risk factors related to ADHD in children with epilepsy.</div></div><div><h3>Methods</h3><div>We conducted this study according to the PRISMA guidelines(PROSPERO:CRD42018094617).A systematic search was performed on PubMed,Embase,PsycINFO,Cochrane Library,and Web of Science from inception until December 2023,based on the developed search strategies.The included studies were appraised for quality using three different approaches according to the three-layer analytical framework,in which diagnostic accuracy of a single instrument(Layer 1)was assessed using QUADAS-2,discriminant validity(Layer 2)was analyzed with the Newcastle-Ottawa Scale,and risk factor/prevalence evidence synthesis(Layer 3)was synthesized narratively.Meta-analyses were carried out using the DerSimonian-Laird random-effects models,and heterogeneity assessment was conducted.</div></div><div><h3>Results</h3><div>Twelve studies met inclusion criteria for qualitative synthesis.Diagnostic accuracy(Layer 1):The SDQ-Hyperactivity subscale had the highest diagnostic accuracy(sensitivity 86.4%,specificity 97.8%,Youden index 0.84,DOR = 285).Discriminant validity(Layer 2):The overall pooled effect size was g = 0.27(95%CI:0.17–0.38)and the externalizing behavior measures showed the highest discriminant validity(g = 0.54).Risk factor evidence was narratively <span><span>synthesized. In</span><svg><path></path></svg></span> studies which reported extractable association estimates,earlier seizure onset,neurodevelopmental/cognitive vulnerabilities(executive dysfunction,developmental coordination disorder),male sex,medical comorbidities,or higher antiepilep
{"title":"Validity of screening tools and risk factors for Co-occurring ADHD in children with epilepsy: a systematic review and meta-analysis","authors":"Guang Ni, Dong Meng","doi":"10.1016/j.yebeh.2026.110965","DOIUrl":"10.1016/j.yebeh.2026.110965","url":null,"abstract":"<div><h3>Background</h3><div>Attention-deficit/hyperactivity disorder(ADHD)is the most common neuropsychiatric comorbidity in children with epilepsy and occurs at prevalence rates 2.5 to 5.5 times higher in children with epilepsy than the general <span><span>population. To</span><svg><path></path></svg></span> date,the largest comprehensive <em>meta</em>-analysis(46 studies)estimated the pooled ADHD prevalence among children with epilepsy to be almost one-third(30.7%),with a greater proportion of the inattentive subtype.Children with epilepsy who also have ADHD have poorer seizure outcomes,lower quality of life,academic underachievement,and increased healthcare utilization.Despite being present in so many of them,ADHD frequently remains underdiagnosed in children with epilepsy because of symptom overlap,diagnostic complexity,and the lack of standardized screening <span><span>protocols. In</span><svg><path></path></svg></span> addition,both the validity of screening instruments and risk factors associated with comorbid ADHD need to be studied to develop ways to diagnose and treat ADHD in this vulnerable population.</div></div><div><h3>Objective</h3><div>To assess the diagnostic accuracy and discriminant validity of ADHD screening tools for children with epilepsy and comorbid ADHD and to conduct a systematic review and <em>meta</em>-analysis on the risk factors related to ADHD in children with epilepsy.</div></div><div><h3>Methods</h3><div>We conducted this study according to the PRISMA guidelines(PROSPERO:CRD42018094617).A systematic search was performed on PubMed,Embase,PsycINFO,Cochrane Library,and Web of Science from inception until December 2023,based on the developed search strategies.The included studies were appraised for quality using three different approaches according to the three-layer analytical framework,in which diagnostic accuracy of a single instrument(Layer 1)was assessed using QUADAS-2,discriminant validity(Layer 2)was analyzed with the Newcastle-Ottawa Scale,and risk factor/prevalence evidence synthesis(Layer 3)was synthesized narratively.Meta-analyses were carried out using the DerSimonian-Laird random-effects models,and heterogeneity assessment was conducted.</div></div><div><h3>Results</h3><div>Twelve studies met inclusion criteria for qualitative synthesis.Diagnostic accuracy(Layer 1):The SDQ-Hyperactivity subscale had the highest diagnostic accuracy(sensitivity 86.4%,specificity 97.8%,Youden index 0.84,DOR = 285).Discriminant validity(Layer 2):The overall pooled effect size was g = 0.27(95%CI:0.17–0.38)and the externalizing behavior measures showed the highest discriminant validity(g = 0.54).Risk factor evidence was narratively <span><span>synthesized. In</span><svg><path></path></svg></span> studies which reported extractable association estimates,earlier seizure onset,neurodevelopmental/cognitive vulnerabilities(executive dysfunction,developmental coordination disorder),male sex,medical comorbidities,or higher antiepilep","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110965"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147303676","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 : 2026-05-01Epub Date: 2026-02-21DOI: 10.1016/j.yebeh.2026.110964
Elaine T. Kiriakopoulos , Allyson Goldstein , Sarah J. Kaden , Emma T. Larracey , Persis V. Commissariat , Sarah Prieto , Kathryn Giordano , Shehjar Sadhu , Dhaval Solanki , Kunal Mankodiya , Geoffrey Tremont , Seth A. Margolis
Objective
Internalized stigma is a prevalent source of distress among people with epilepsy (PWE), with deleterious effects on psychosocial well-being. RISE ABOVE is a self-paced, online, self-management program designed to help PWE recognize and cope with internalized stigma. This qualitative study explored participant perceptions of growth and misalignment associated with completing RISE ABOVE.
Method
Twenty adults with epilepsy (age 47.30 ± 14.25 years; 50% female; 30% BIPOC) who reported internalized stigma participated in one-hour, semi-structured Zoom interviews following program completion. Transcripts were double-coded in NVivo 14 and analyzed using a hybrid exploratory and thematic analysis approach to identify factors influencing participant experience.
Results
Reported areas of growth included increased awareness of stigma and its manifestations, gaining validation and connection by seeing their experiences reflected in the content, enhanced emotional awareness and stress management, empowerment to express oneself authentically, greater emotional resilience, and learning to think more flexibly and methodically when handling stigma-related challenges. Areas of misalignment included limited readiness for change, difficulty relating to the program’s content, discomfort with stigma-focused or introspective exercises, beliefs that societal stigma cannot be modified through individual coping alone, and dissatisfaction with program length and complexity.
Discussion
Participants viewed RISE ABOVE as a beneficial stigma self-management resource and described several factors that facilitated positive change. They also identified key programmatic limitations to target for refinement and further evaluation. Understanding the factors that shape engagement and utilization will increase RISE ABOVE’s acceptability and prepare it for larger-scale efficacy testing.
{"title":"Understanding Participant-Perceived growth and misalignment in an online epilepsy stigma Self-Management Program: A qualitative study","authors":"Elaine T. Kiriakopoulos , Allyson Goldstein , Sarah J. Kaden , Emma T. Larracey , Persis V. Commissariat , Sarah Prieto , Kathryn Giordano , Shehjar Sadhu , Dhaval Solanki , Kunal Mankodiya , Geoffrey Tremont , Seth A. Margolis","doi":"10.1016/j.yebeh.2026.110964","DOIUrl":"10.1016/j.yebeh.2026.110964","url":null,"abstract":"<div><h3>Objective</h3><div>Internalized stigma is a prevalent source of distress among people with epilepsy (PWE), with deleterious effects on psychosocial well-being. RISE ABOVE is a self-paced, online, self-management program designed to help PWE recognize and cope with internalized stigma. This qualitative study explored participant perceptions of growth and misalignment associated with completing RISE ABOVE.</div></div><div><h3>Method</h3><div>Twenty adults with epilepsy (age 47.30 ± 14.25 years; 50% female; 30% BIPOC) who reported internalized stigma participated in one-hour, semi-structured Zoom interviews following program completion. Transcripts were double-coded in NVivo 14 and analyzed using a hybrid exploratory and thematic analysis approach to identify factors influencing participant experience.</div></div><div><h3>Results</h3><div>Reported areas of growth included increased awareness of stigma and its manifestations, gaining validation and connection by seeing their experiences reflected in the content, enhanced emotional awareness and stress management, empowerment to express oneself authentically, greater emotional resilience, and learning to think more flexibly and methodically when handling stigma-related challenges. Areas of misalignment included limited readiness for change, difficulty relating to the program’s content, discomfort with stigma-focused or introspective exercises, beliefs that societal stigma cannot be modified through individual coping alone, and dissatisfaction with program length and complexity.</div></div><div><h3>Discussion</h3><div>Participants viewed RISE ABOVE as a beneficial stigma self-management resource and described several factors that facilitated positive change. They also identified key programmatic limitations to target for refinement and further evaluation. Understanding the factors that shape engagement and utilization will increase RISE ABOVE’s acceptability and prepare it for larger-scale efficacy testing.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110964"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147270114","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 : 2026-05-01Epub Date: 2026-02-27DOI: 10.1016/j.yebeh.2026.110943
M. Jeno , J. Koop , M. Gabriel , A. Caraway , E. Novotny , K. Patrick , E. Gonzalez-Giraldo , K. Auguste , A. Ostendorf , K. McNally , A. Alexander , G. Berrios-Servios , K. Eschbach , J. Bolton , A. Ailion , R. Singh , L. Wong-Kisiel , M. Zaccariello , P. Tatachar , P. Duong , M. Ciliberto
Background
Pediatric patients with drug-resistant epilepsy (DRE) are often referred for evaluation to consider epilepsy surgery. Neuropsychological testing is recommended for all patients undergoing surgical evaluation. Prevalence and factors affecting testing of neuropsychological testing in palliative epilepsy surgery are unknown.
Methods
Data was collected from the PERC surgical database, a collaboration of pediatric epilepsy centers prospectively enrolling pediatric patients undergoing epilepsy surgery evaluation. Pediatric patients with DRE who sought care at PERC centers, underwent first-time palliative epilepsy surgery, and had neurocognitive data collected were included.
Results
569 patients had complete data with some form of neuropsychological assessment documented. Patients with focal motor (0.42 [CI 95% 0.28, 0.62] < 0.01) or cognitive delays (0.20 [CI 95% 0.13, 0.31] < 0.01) were less likely to receive neuropsychological testing, as were those with genetic etiology (0.5x, [CI 95% 0.33, 0.75] p < 0.01). The number of domains evaluated within corpus callosotomy (CC) (median 3, (1-9) < 0.01) and hemispherectomy (median 4 (1-9) < 0.01) groups was significantly lower than testing in other surgical groups. In addition the cognitive IQ and adaptive IQ were lower in patients undergoing CC and compared to other groups.
Conclusions
All types of patients undergoing palliative epilepsy surgery had some neuropsychological testing. However, those with lower IQ and those undergoing CC or hemispherectomy were less likely to undergo testing. Reduced rates of testing in certain groups indicates room for improvement, especially given recommendations to use testing to help determine surgical success.
{"title":"Neuropsychological assessments in a large cohort of pediatric palliative epilepsy surgery patients","authors":"M. Jeno , J. Koop , M. Gabriel , A. Caraway , E. Novotny , K. Patrick , E. Gonzalez-Giraldo , K. Auguste , A. Ostendorf , K. McNally , A. Alexander , G. Berrios-Servios , K. Eschbach , J. Bolton , A. Ailion , R. Singh , L. Wong-Kisiel , M. Zaccariello , P. Tatachar , P. Duong , M. Ciliberto","doi":"10.1016/j.yebeh.2026.110943","DOIUrl":"10.1016/j.yebeh.2026.110943","url":null,"abstract":"<div><h3>Background</h3><div>Pediatric patients with drug-resistant epilepsy (DRE) are often referred for evaluation to consider epilepsy surgery. Neuropsychological testing is recommended for all patients undergoing surgical evaluation. Prevalence and factors affecting testing of neuropsychological testing in palliative epilepsy surgery are unknown.</div></div><div><h3>Methods</h3><div>Data was collected from the PERC surgical database, a collaboration of pediatric epilepsy centers prospectively enrolling pediatric patients undergoing epilepsy surgery evaluation. Pediatric patients with DRE who sought care at PERC centers, underwent first-time palliative epilepsy surgery, and had neurocognitive data collected were included.</div></div><div><h3>Results</h3><div>569 patients had complete data with some form of neuropsychological assessment documented. Patients with focal motor (0.42 [CI 95% 0.28, 0.62] < 0.01) or cognitive delays (0.20 [CI 95% 0.13, 0.31] < 0.01) were less likely to receive neuropsychological testing, as were those with genetic etiology (0.5x, [CI 95% 0.33, 0.75] p < 0.01). The number of domains evaluated within corpus callosotomy (CC) (median 3, (1-9) < 0.01) and hemispherectomy (median 4 (1-9) < 0.01) groups was significantly lower than testing in other surgical groups. In addition the cognitive IQ and adaptive IQ were lower in patients undergoing CC and compared to other groups.</div></div><div><h3>Conclusions</h3><div>All types of patients undergoing palliative epilepsy surgery had some neuropsychological testing. However, those with lower IQ and those undergoing CC or hemispherectomy were less likely to undergo testing. Reduced rates of testing in certain groups indicates room for improvement, especially given recommendations to use testing to help determine surgical success.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"178 ","pages":"Article 110943"},"PeriodicalIF":2.3,"publicationDate":"2026-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"147321547","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}