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Novel insights into cognitive network alterations in temporal lobe epilepsy: A [18F]SynVesT-1 PET study 颞叶癫痫认知网络改变的新见解:A [18F]SynVesT-1 PET研究
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-11 DOI: 10.1016/j.yebeh.2025.110826
Li Qin , Bei Chen , Ling Xiao , Haoyue Zhu , Manliu Hou , Xiaoyan Long , Weiting Tang , Xiaobo Zhang , Ming Qv , Yongxiang Tang , Zhimin Zhang , Shuo Hu , Li Feng

Background and objectives

Current therapeutic interventions towards cognitive deficits in temporal lobe epilepsy (TLE) remain suboptimal due to incomplete elucidation of the underlying pathophysiological mechanisms. Emerging evidence implicates synapse loss as a critical neuropathological substrate associated with cognitive dysfunction. Given that synapse constitute the fundamental structural units of neural circuit and established disruption of cognitive networks in epilepsy, this study innovatively explores epileptic cognitive network alteration from synaptic viewpoint.

Methods

Utilizing [18F]SynVesT-1 positron emission tomography (PET) for in-vivo synaptic density quantification and Kullback-Leibler Divergence Similarity Estimation (KLSE) depicting for individual-level network characterization, we identified synaptic connectome alteration in TLE patients. The relationship between abnormal synaptic connectivity and cognitive assessment scores was evaluated by Spearman correlation analysis.

Results

We observed significant global reduction in edge connectivity and decreased weighted connectivity strength in TLE, which correlates with impaired neuropsychological performance in both intelligence and memory domains respectively. Hypoconnectivity in the frontal lobe and superior temporal gyrus correlated with poorer linguistic intelligence quotient (IQ). The caudate nucleus emerged as a critical hub, with its eigenvector centrality showing positive associations with both spatial skills and full-scale intelligence quotient (FSIQ). Hippocampal-posterior cortical circuitry involving the interaction between the hippocampus and the lingual gyrus, angular gyrus, calcarine fissure, mediated the variance in memory quotient (MQ).

Conclusion

These findings suggest that synaptic connectivity attenuation may serve as a novel biomarker for cognitive deficits in temporal lobe epilepsy, providing an innovative perspective for targeted clinical interventions.
背景和目的目前针对颞叶癫痫(TLE)认知缺陷的治疗干预措施由于其潜在的病理生理机制尚未完全阐明,仍然不够理想。新出现的证据暗示突触丧失是与认知功能障碍相关的关键神经病理基质。鉴于突触是神经回路的基本结构单位,并在癫痫中建立了认知网络的破坏,本研究创新性地从突触的角度探讨了癫痫认知网络的改变。方法利用[18F]SynVesT-1正电子发射断层扫描(PET)进行体内突触密度量化和Kullback-Leibler散度相似性估计(KLSE)描述个体水平的网络表征,我们确定了TLE患者的突触连接组改变。采用Spearman相关分析评估突触连通性异常与认知评估评分的关系。结果我们观察到TLE的边缘连通性和加权连通性强度显著降低,这分别与智力和记忆领域的神经心理表现受损有关。额叶和颞上回的低连通性与较差的语言智商(IQ)相关。尾状核是一个关键的中枢,其特征向量中心性与空间技能和全面智商(FSIQ)呈正相关。海马-后皮层回路涉及海马与舌回、角回、钙质裂之间的相互作用,介导了记忆商(MQ)的变化。结论突触连通性衰减可能作为颞叶癫痫认知缺陷的一种新的生物标志物,为有针对性的临床干预提供了新的视角。
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引用次数: 0
Mind the Gap! What do people with epilepsy want to know? 小心缝隙!癫痫患者想知道什么?
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-13 DOI: 10.1016/j.yebeh.2025.110861
Sarah Jones , Heather Angus-Leppan

Background

There is little research about the questions asked by people with epilepsy, and how these are answered. Information sources include standardised medical or charity websites, responses generated by artificial intelligence paradigms and informal peer support.

Methods

Through social media (X, formerly Twitter) people with epilepsy were asked “what would you ask a neurologist/epileptologist” and “do you have any questions relating to your epilepsy”. Responses were themed using an unsupervised topic modelling algorithm to categorise into an aggregated question set. Thematic qualitative analysis characterised emotional content and underlying patterns of the responses.

Results

Questions and responses were in English. There were 2752 responses from Europe, North America and Australia, in the format of natural language. 74% of the questions generated are not currently answered by verified sources. 83% centred on restrictions and limitations.

Conclusions

The study highlights a gap between the concerns of people with epilepsy and accurate, readily available information. The unsupervised topic modelling algorithm successfully grouped the questions into themes. Most questions focused on restrictions and loss of opportunities and enjoyment. These currently unanswered questions could lead people to rely on unverified information. The work highlights the need for evidence-based answers, and a focus on positive messages about what people with epilepsy can do to preserve autonomy and maximise quality of life. Future work will seek patient and carer questions in different languages and settings and develop systems to improve information provision for people with epilepsy.
关于癫痫患者提出的问题以及如何回答这些问题的研究很少。信息来源包括标准化的医疗或慈善网站、人工智能范例产生的反应以及非正式的同伴支持。方法通过社交媒体(X,以前的Twitter),癫痫患者被问及“你会问神经科医生/癫痫学家什么”和“你对癫痫有什么问题吗”。使用无监督主题建模算法对回答进行主题化,将其分类为聚合问题集。主题定性分析表征了情感内容和潜在的反应模式。结果所有问题和回答均为英文。共有2752份来自欧洲、北美和澳大利亚的回复,以自然语言的形式出现。所产生的问题中有74%目前没有经过验证的来源回答。83%集中于限制和限制。结论:该研究突出了癫痫患者的担忧与准确、容易获得的信息之间的差距。无监督主题建模算法成功地将问题分组到主题中。大多数问题集中在限制和失去机会和享受。这些目前没有答案的问题可能导致人们依赖未经证实的信息。这项工作强调需要以证据为基础的答案,并重点关注癫痫患者可以做些什么来保持自主性和最大限度地提高生活质量的积极信息。未来的工作将以不同的语言和环境寻求患者和护理人员的问题,并开发系统以改善为癫痫患者提供的信息。
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引用次数: 0
Spectral profile of early ictal EEG patterns in status epilepticus predicts therapy response 在癫痫持续状态的早期脑电图模式的频谱分布预测治疗反应
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-10 DOI: 10.1016/j.yebeh.2025.110827
Tamara M. Welte , Susanne Noell , Rüdiger Hopfengärtner , Stefan Rampp , Jenny Stritzelberger , Johannes D. Lang , Caroline Reindl , Kosmas Macha , Julia Koehn , Joji B. Kuramatsu , Stefan Schwab , Hajo M. Hamer , Stephanie Gollwitzer

Background

Status epilepticus (SE) is a life-threatening condition and requires prompt recognition and timely initiation of treatment. We aimed to define EEG characteristics in initial ictal EEG recordings predicting response to 1st and 2nd line SE therapy and allowing for early identification of refractory SE (rSE) with need for anesthesia and intensive care management.

Methods

All adult patients diagnosed with SE between 2018 and 2022 were screened for inclusion. The following inclusion criteria applied: baseline EEG demonstrating SE recorded within 48 h from symptom onset and without prior administration of 3rd line SE therapy; follow-up EEG within 48 h from baseline EEG. The first artefact-free one to three minute EEG epochs containing unequivocal SE patterns according to ACNS criteria underwent EEG power spectral analysis.

Results

Of the 50 patients included in our study, 22 (44 %) responded to 1st and 2nd line SE therapy (group non-rSE); in 28 patients (56 %) SE was still present in follow-up EEG and/or 3rd line SE therapy had been initiated based on clinical judgement (group rSE). In group non-rSE the power spectrum contained significantly higher amounts of Delta (median, 78.5 % vs 66.5 %, p = 0.0002) and lower proportions of Alpha power (3 % vs 8 %, p < 0.0001) compared to group rSE; Alpha/Delta ratio also differed significantly in both groups (0.04 vs 0.12, p < 0.0001).

Conclusion

Spectral power analysis of initial SE EEG can help to stratify the risk of rSE development and facilitate timely targeted therapy with the aim to improve clinical outcome of affected patients.
背景:癫痫持续状态(SE)是一种危及生命的疾病,需要及时识别和及时开始治疗。我们的目的是确定初始脑电图记录的脑电图特征,预测对一线和二线SE治疗的反应,并允许早期识别需要麻醉和重症监护管理的难治性SE (rSE)。方法对2018 ~ 2022年诊断为SE的所有成年患者进行筛选纳入。采用以下纳入标准:在症状出现后48小时内记录的基线脑电图显示SE,且先前未接受三线SE治疗;基线后48小时内随访脑电图。根据ACNS标准对第一个无伪影的1 ~ 3分钟脑电信号进行功率谱分析。在我们研究的50例患者中,22例(44%)对一线和二线SE治疗有反应(非rse组);28例(56%)患者在随访脑电图中仍存在SE和/或根据临床判断开始了三线SE治疗(rSE组)。在非rSE组中,与rSE组相比,功率谱中δ功率的数量显著增加(中位数,78.5% vs 66.5%, p = 0.0002), α功率的比例显著降低(3% vs 8%, p < 0.0001);两组的Alpha/Delta比值也有显著差异(0.04 vs 0.12, p < 0.0001)。结论初始SE脑电图谱功率分析有助于对rSE发展风险进行分层,及时进行靶向治疗,以改善患者的临床预后。
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引用次数: 0
Famous persons with epilepsy – Trends and patterns in the medical literature 著名癫痫患者-医学文献中的趋势和模式。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-03 DOI: 10.1016/j.yebeh.2025.110850
Lars Kullman
This review analyzes 155 papers published between 1966 and 2025 examining epilepsy in 108 famous persons (see Supplementary Material for complete list), using the PubMed “famous persons” MeSH term combined with epilepsy-related search terms. Vincent van Gogh (37 papers, 23.9 %) and Fyodor Dostoevsky (34 papers, 21.9 %) dominated the literature, together accounting for 45.8 % of all publications. Writers and artists received the most scholarly attention, with 72.3 % of papers published after 2000. Most papers discussed epilepsy generally without specifying type, while temporal lobe epilepsy was the most specified subtype. Notable biases were identified: 89.8 % male subjects and 44.0 % from 19th-20th centuries. The extreme concentration on Van Gogh and Dostoevsky, combined with significant gender and temporal biases, raises questions about publication bias and the perpetuation of medical mythology. While retrospective diagnosis remains methodologically challenging, this literature provides valuable insights into changing medical paradigms and societal attitudes toward epilepsy.
本综述使用PubMed“名人”MeSH术语结合癫痫相关搜索词,分析了1966年至2025年间发表的155篇论文,研究了108位名人的癫痫(完整列表见补充材料)。Vincent van Gogh(37篇,23.9%)和Fyodor Dostoevsky(34篇,21.9%)占据主导地位,共占总发表量的45.8%。作家和艺术家受到的学术关注最多,2000年以后发表的论文占72.3%。大多数文献对癫痫的讨论一般不明确类型,而颞叶癫痫是最明确的亚型。发现了显著的偏差:89.8%的受试者为男性,44.0%的受试者来自19 -20世纪。对梵高(Van Gogh)和陀思妥耶夫斯基(Dostoevsky)的极度关注,加上明显的性别和时间偏见,引发了有关出版偏见和医学神话永久化的问题。虽然回顾性诊断在方法上仍然具有挑战性,但这些文献为改变医学范式和社会对癫痫的态度提供了有价值的见解。
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引用次数: 0
Talking SUDEP: Gaps, confidence and training needs among Spanish epilepsy professionals 谈论猝死:西班牙癫痫专业人员的差距、信心和培训需求
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-02 DOI: 10.1016/j.yebeh.2025.110836
Je Ssy Low , Lance Watkins , Kevin Hampel , Laura Vilella , Rodrigo Rocamora , Paul Bassett , Rohit Shankar , Vicente Villanueva

Objective

Sudden Unexpected Death in Epilepsy (SUDEP) is a major cause of epilepsy-related mortality, yet discussions about SUDEP in clinical settings remain inconsistent. This study aimed to assess the perspectives, practices, and barriers related to SUDEP counselling for epilepsy professionals in Spain.

Methods

A cross-sectional online survey of 17 Likert style questions was disseminated via the Spanish Epilepsy Society between September 2023 and February 2024 to epilepsy professionals in Spain using a non-discriminatory exponential snowballing technique leading to non-probability sampling. The survey was a validated instrument previously employed in similar international studies. Questions revolved around SUDEP communication and counselling. Descriptive and comparative analyses were conducted.

Results

54 professionals responded, with the majority being adult neurologists-epileptologists. While most respondents acknowledged the importance of SUDEP counselling, none reported discussing it with all patients. SUDEP was typically discussed in response to risk changes (85 %) or patient enquiry (47 %). Only 9 % used structured communication tools, and 28 % had access to bereavement support services. Perceived low clinical risk (74 %), concern about patient distress (62 %), and limited consultation time (57 %) were the most common barriers. Comparative analysis revealed no statistically significant differences between adult neurologists and paediatric neurologists, though paediatricians reported more negative counselling experiences.

Conclusions

Despite strong recognition of its importance, SUDEP communication in Spain is infrequent and inconsistent. Key barriers include clinical judgment, time constraints, and limited resources. The findings underscore the need for national guideline, structured tools, and targeted training to support routine SUDEP counselling in Spanish clinical practice.
目的癫痫猝死(SUDEP)是癫痫相关死亡的主要原因,但临床对SUDEP的讨论仍不一致。本研究旨在评估与西班牙癫痫专业人员猝死症咨询相关的观点、做法和障碍。方法于2023年9月至2024年2月期间,通过西班牙癫痫协会向西班牙的癫痫专业人员分发了17个Likert式问题的横断面在线调查,采用非概率抽样的非歧视性指数滚雪球技术。这项调查是以前在类似的国际研究中使用的一种有效的工具。问题围绕着SUDEP的沟通和咨询。进行了描述性和比较性分析。结果54名专业人员回应,其中大多数是成人神经科-癫痫科医生。虽然大多数受访者承认SUDEP咨询的重要性,但没有人报告与所有患者讨论过。SUDEP通常在应对风险变化(85%)或患者询问(47%)时进行讨论。只有9%的人使用结构化的沟通工具,28%的人可以获得丧亲支持服务。感知到较低的临床风险(74%)、对患者痛苦的担忧(62%)和有限的咨询时间(57%)是最常见的障碍。对比分析显示,成人神经科医生和儿科神经科医生之间没有统计学上的显著差异,尽管儿科医生报告的负面咨询经历更多。结论:尽管人们强烈认识到SUDEP的重要性,但在西班牙,SUDEP的沟通并不频繁且不一致。主要障碍包括临床判断、时间限制和有限的资源。研究结果强调了在西班牙临床实践中需要国家指南、结构化工具和有针对性的培训来支持常规SUDEP咨询。
{"title":"Talking SUDEP: Gaps, confidence and training needs among Spanish epilepsy professionals","authors":"Je Ssy Low ,&nbsp;Lance Watkins ,&nbsp;Kevin Hampel ,&nbsp;Laura Vilella ,&nbsp;Rodrigo Rocamora ,&nbsp;Paul Bassett ,&nbsp;Rohit Shankar ,&nbsp;Vicente Villanueva","doi":"10.1016/j.yebeh.2025.110836","DOIUrl":"10.1016/j.yebeh.2025.110836","url":null,"abstract":"<div><h3>Objective</h3><div>Sudden Unexpected Death in Epilepsy (SUDEP) is a major cause of epilepsy-related mortality, yet discussions about SUDEP in clinical settings remain inconsistent. This study aimed to assess the perspectives, practices, and barriers related to SUDEP counselling for epilepsy professionals in Spain.</div></div><div><h3>Methods</h3><div>A cross-sectional online survey of 17 Likert style questions was disseminated via the Spanish Epilepsy Society between September 2023 and February 2024 to epilepsy professionals in Spain using a non-discriminatory exponential snowballing technique leading to non-probability sampling. The survey was a validated instrument previously employed in similar international studies. Questions revolved around SUDEP communication and counselling. Descriptive and comparative analyses were conducted.</div></div><div><h3>Results</h3><div>54 professionals responded, with the majority being adult neurologists-epileptologists. While most respondents acknowledged the importance of SUDEP counselling, none reported discussing it with all patients. SUDEP was typically discussed in response to risk changes (85 %) or patient enquiry (47 %). Only 9 % used structured communication tools, and 28 % had access to bereavement support services. Perceived low clinical risk (74 %), concern about patient distress (62 %), and limited consultation time (57 %) were the most common barriers. Comparative analysis revealed no statistically significant differences between adult neurologists and paediatric neurologists, though paediatricians reported more negative counselling experiences.</div></div><div><h3>Conclusions</h3><div>Despite strong recognition of its importance, SUDEP communication in Spain is infrequent and inconsistent. Key barriers include clinical judgment, time constraints, and limited resources. The findings underscore the need for national guideline, structured tools, and targeted training to support routine SUDEP counselling in Spanish clinical practice.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110836"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145651765","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}
引用次数: 0
Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndrome lenox - gastaut综合征和Dravet综合征患者生活质量量表-残疾(qi -残疾)的心理计量学验证
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-02 DOI: 10.1016/j.yebeh.2025.110840
Drishti Shah , Peter Jacoby , Helen Doll , Hoan Do , J. Scott Andrews , Heather Romero , Gregor Gibson , Jenny Downs
Backgound.
To evaluate the psychometric properties of the Quality of Life Inventory −Disability (QI-Disability) for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare developmental and epileptic encephalopathy conditions.

Methods

Cross-sectional data for individuals were drawn from the Adelphi DS & LGS Disease Specific Programme including the caregiver-reported QI-Disability and EQ-5D-5L, and physician-reported (7-point Likert scale) rating or quality of life. Factor structure of the QI-Disability was assessed using confirmatory factor analysis with goodness-of-fit statistics and internal consistency was assessed using Cronbach’s alpha. Convergent validity was assessed by evaluating relationships between QI-Disability, EQ-5D-5L scores, and physician QOL ratings.

Results

There were 154 patients with DS and 196 patients with LGS. The mean (SD) total QI-Disability score was 57.3 (SD 11.9) for DS and 58.9 (SD 13.8) for LGS. Fit statistics for the 6-factor QI-Disability model were mostly satisfactory; the factor loading for one item was unsatisfactory. Good internal consistency (alpha > 0.7) was found for all QI-Disability domains and for the total score in both LGS and DS groups. Convergent validity was demonstrated with correlations being as expected between QI-Disability and EQ-5D-5L scores, for example, strong correlations between the QI-Disability Physical Health and EQ-5D pain/discomfort dimension scores. There was a mean increase of approximately 3 points in the QI-Disability total score per unit category change in the physician-rated QOL scale.

Conclusions

QI-Disability had mostly satisfactory evidence of validity and reliability for DS and LGS and appears suitable for use in clinical practice and clinical trials.
Backgound。评估患有Dravet综合征(DS)或lenox - gastaut综合征(LGS)这两种罕见的发育性和癫痫性脑病的个体的生活质量量表-残疾(qi -残疾)的心理测量特性。方法个人的横断面数据来自Adelphi DS &; LGS疾病特定计划,包括护理人员报告的qi -残疾和EQ-5D-5L,以及医生报告的(7点李克特量表)生活质量评级。采用拟合优度统计的验证性因子分析评估qi -残疾的因素结构,采用Cronbach 's alpha评估内部一致性。通过评估QI-Disability、EQ-5D-5L评分和医师QOL评分之间的关系来评估收敛效度。结果DS患者154例,LGS患者196例。DS组和LGS组的平均(SD)总分分别为57.3分(SD 11.9)和58.9分(SD 13.8)。6因素QI-Disability模型的拟合统计结果大多令人满意;有一个项目的因子负载不令人满意。在所有QI-Disability域和LGS组和DS组的总分中发现了良好的内部一致性(alpha > 0.7)。QI-Disability与EQ-5D- 5l评分之间的相关性证明了收敛效度,例如,QI-Disability Physical Health与EQ-5D疼痛/不适维度评分之间存在强相关性。在医生评定的生活质量量表中,每单位类别变化的qi -残疾总分平均增加约3分。结论si -残障量表对DS和LGS的效度和信度证据基本满意,适用于临床实践和临床试验。
{"title":"Psychometric validation of the quality of life Inventory − Disability (QI-Disability) among patients with Lennox-Gastaut syndrome and Dravet syndrome","authors":"Drishti Shah ,&nbsp;Peter Jacoby ,&nbsp;Helen Doll ,&nbsp;Hoan Do ,&nbsp;J. Scott Andrews ,&nbsp;Heather Romero ,&nbsp;Gregor Gibson ,&nbsp;Jenny Downs","doi":"10.1016/j.yebeh.2025.110840","DOIUrl":"10.1016/j.yebeh.2025.110840","url":null,"abstract":"<div><div>Backgound.</div><div>To evaluate the psychometric properties of the Quality of Life Inventory −Disability (QI-Disability) for individuals with Dravet syndrome (DS) or Lennox-Gastaut syndrome (LGS), two rare developmental and epileptic encephalopathy conditions.</div></div><div><h3>Methods</h3><div>Cross-sectional data for individuals were drawn from the Adelphi DS &amp; LGS Disease Specific Programme including the caregiver-reported QI-Disability and EQ-5D-5L, and physician-reported (7-point Likert scale) rating or quality of life. Factor structure of the QI-Disability was assessed using confirmatory factor analysis with goodness-of-fit statistics and internal consistency was assessed using Cronbach’s alpha. Convergent validity was assessed by evaluating relationships between QI-Disability, EQ-5D-5L scores, and physician QOL ratings.</div></div><div><h3>Results</h3><div>There were 154 patients with DS and 196 patients with LGS. The mean (SD) total QI-Disability score was 57.3 (SD 11.9) for DS and 58.9 (SD 13.8) for LGS. Fit statistics for the 6-factor QI-Disability model were mostly satisfactory; the factor loading for one item was unsatisfactory. Good internal consistency (alpha &gt; 0.7) was found for all QI-Disability domains and for the total score in both LGS and DS groups. Convergent validity was demonstrated with correlations being as expected between QI-Disability and EQ-5D-5L scores, for example, strong correlations between the QI-Disability Physical Health and EQ-5D pain/discomfort dimension scores. There was a mean increase of approximately 3 points in the QI-Disability total score per unit category change in the physician-rated QOL scale.</div></div><div><h3>Conclusions</h3><div>QI-Disability had mostly satisfactory evidence of validity and reliability for DS and LGS and appears suitable for use in clinical practice and clinical trials.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110840"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145651764","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}
引用次数: 0
Between seizures and schooling: qualitative insights into the experiences of children with epilepsy 癫痫发作与上学之间:对癫痫儿童经历的定性分析
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-20 DOI: 10.1016/j.yebeh.2025.110869
Seda Kılıç , Atiye Karakul , Duygu Sönmez Düzkaya

Background

Epilepsy is one of the most common chronic neurological disorders in childhood and can negatively affect children’s academic performance, social relationships, and emotional well-being. This study aimed to examine the school experiences of children aged 10–18 years.

Method

The research was conducted between August 2024 and May 2025 at the Mersin University Hospital Pediatric Neurology Outpatient Clinic. Twenty children with epilepsy, aged 10–18 years, were included. After transcription, interview data were coded, themes were generated, and relationships among codes and subcodes were analyzed using MAXQDA 22. Eight themes and 51 codes emerged: perceptions of ıllness, emotional responses to epilepsy, challenges in daily life, seizure symptoms, postictal experiences at school, peer relationships, academic performance and engagement, and social support at school.

Results

Children frequently reported emotional challenges such as sadness, fear, and anxiety regarding their condition. Daily life was significantly impacted by ’functional impairments’ (e.g., motor control issues), activity limitations (e.g., physical fatigue during sports), and participation restrictions (e.g., exclusion from social events and school absenteeism). During seizures, the most common symptoms were loss of consciousness and dizziness, followed by postictal states of fear, fatigue, and confusion. Regarding peer relationships, while some friendships remained unaffected, “concealment of epilepsy” emerged as a key subtheme, with some children hiding their condition to avoid exclusion. Academic engagement was often hindered by concentration difficulties and absenteeism related to medical appointments. Guidance counselors and peers were identified as primary sources of social support.

Conclusion

Children with epilepsy face significant emotional, social, and academic challenges in the school environment. Awareness-raising activities within schools and broader community education efforts, including the use of social media, are recommended to reduce stigma and support the well-being of these children.
癫痫是儿童最常见的慢性神经系统疾病之一,可对儿童的学习成绩、社会关系和情绪健康产生负面影响。本研究旨在调查10-18岁儿童的学校经历。方法研究于2024年8月至2025年5月在梅尔辛大学医院儿科神经病学门诊进行。包括20名10-18岁的癫痫患儿。转录后,对访谈数据进行编码,生成主题,并使用MAXQDA 22分析码与子码之间的关系。出现了8个主题和51个代码:对ıllness的看法、对癫痫的情绪反应、日常生活中的挑战、癫痫症状、在学校的经历、同伴关系、学习成绩和参与以及学校的社会支持。结果儿童经常报告情绪上的挑战,如悲伤、恐惧和焦虑。日常生活受到“功能障碍”(例如,运动控制问题)、活动限制(例如,运动时的身体疲劳)和参与限制(例如,被排除在社交活动之外和旷课)的显著影响。在癫痫发作期间,最常见的症状是意识丧失和头晕,其次是恐惧、疲劳和混乱的阳性状态。关于同伴关系,虽然一些友谊没有受到影响,但“隐瞒癫痫”成为一个关键的次要主题,一些儿童隐瞒自己的病情以避免被排斥。由于注意力难以集中和与医疗预约有关的缺勤,学生的学习活动常常受到阻碍。辅导员和同伴被认为是社会支持的主要来源。结论癫痫患儿在学校环境中面临着显著的情感、社交和学业挑战。建议在学校开展提高认识活动和更广泛的社区教育工作,包括使用社交媒体,以减少对这些儿童的污名化,并支持这些儿童的福祉。
{"title":"Between seizures and schooling: qualitative insights into the experiences of children with epilepsy","authors":"Seda Kılıç ,&nbsp;Atiye Karakul ,&nbsp;Duygu Sönmez Düzkaya","doi":"10.1016/j.yebeh.2025.110869","DOIUrl":"10.1016/j.yebeh.2025.110869","url":null,"abstract":"<div><h3>Background</h3><div>Epilepsy is one of the most common chronic neurological disorders in childhood and can negatively affect children’s academic performance, social relationships, and emotional well-being. This study aimed to examine the school experiences of children aged 10–18 years.</div></div><div><h3>Method</h3><div>The research was conducted between August 2024 and May 2025 at the Mersin University Hospital Pediatric Neurology Outpatient Clinic. Twenty children with epilepsy, aged 10–18 years, were included. After transcription, interview data were coded, themes were generated, and relationships among codes and subcodes were analyzed using MAXQDA 22. Eight themes and 51 codes emerged: perceptions of ıllness, emotional responses to epilepsy<strong>,</strong> challenges in daily life, seizure symptoms, postictal experiences at school, peer relationships, academic performance and engagement, and social support at school.</div></div><div><h3>Results</h3><div>Children frequently reported emotional challenges such as sadness, fear, and anxiety regarding their condition. Daily life was significantly impacted by ’functional impairments’ (e.g., motor control issues), activity limitations (e.g., physical fatigue during sports), and participation restrictions (e.g., exclusion from social events and school absenteeism). During seizures, the most common symptoms were loss of consciousness and dizziness, followed by postictal states of fear, fatigue, and confusion. Regarding peer relationships, while some friendships remained unaffected, “concealment of epilepsy” emerged as a key subtheme, with some children hiding their condition to avoid exclusion. Academic engagement was often hindered by concentration difficulties and absenteeism related to medical appointments. Guidance counselors and peers were identified as primary sources of social support.</div></div><div><h3>Conclusion</h3><div>Children with epilepsy face significant emotional, social, and academic challenges in the school environment. Awareness-raising activities within schools and broader community education efforts, including the use of social media, are recommended to reduce stigma and support the well-being of these children.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110869"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145787494","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}
引用次数: 0
Quality of life and synergistic combinations of antiseizure medication in patients treated with cenobamate in early therapy lines for focal-onset seizures 在局灶性癫痫的早期治疗线中使用cenobamate治疗的患者的生活质量和抗癫痫药物的协同组合
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-10 DOI: 10.1016/j.yebeh.2025.110835
Yaroslav Winter , Raya Abou Dargham , Erik Ellwardt , Thilo Hammen , Christoph Massing , Sarah Gößling , Marina Flotats-Bastardas , Sergiu Groppa , Michael Zemlin , Christopher Meudt

Background

Quality of life is an important outcome measure for patients with epilepsy (PWE). However, data on health-related quality of life (HRQoL) in PWE treated with cenobamate (CNB), a new antiseizure medication (ASM) that achieves a high level of seizure freedom, is scarce. These data are especially important for evaluating the use of CNB in early therapy lines for focal-onset seizures.

Methods

The study population consisted of patients with focal-onset seizures that could not be controlled by fewer than three lifetime ASMs. They began treatment with CNB („CNB group“) or another ASM (controls). Both groups were matched at a ratio of 1:2 based on sex, age, and seizure frequency. HRQoL was evaluated using the Quality of Life in Epilepsy-10 (QOLIE-10), the EuroQol Visual Analogue Scale (EQVAS), and the EuroQol-5-Dimensions (EQ5D) questionnaire. The drug combinations were analyzed.

Results

Of the 231 study participants, 33.3 % were treated with CNB, 19.0 % with valproate, 17.3 % with lacosamide, 16.4 % with levetiracetam, and 13.9 % with topiramate. The percentage improvement in the EQ5D index score from baseline to the 12-month follow-up was higher for CNB (32.2 %) than for other ASMs (3.2 %–17.5 %, p < 0.05). Similar results were obtained for EQVAS (31 % vs. 3.2 %–17.5 %) and QOLIE-10 (46.9 % vs. 13.4 %–28.2 %), p < 0.05. CNB demonstrated superior seizure control and HrQoL when combined with low-dose clobazam and a trend for combination with SV2A modulators.

Conclusion

Our study provides evidence that CNB in early therapy lines for focal-onset seizures is associated with an increased HrQoL. Low-dose clobazam can wok synergistically with CNB. The combination with SV2A modulators showed a positive trend.
生活质量是衡量癫痫患者预后的重要指标。然而,关于使用cenobamate (CNB)治疗PWE的健康相关生活质量(HRQoL)的数据很少,CNB是一种新的抗癫痫药物(ASM),可实现高水平的癫痫发作自由。这些数据对于评估CNB在局灶性癫痫早期治疗中的应用尤其重要。方法研究人群包括局灶性癫痫发作患者,其终生asm不能控制在3次以下。他们开始用CNB(“CNB组”)或另一种ASM(对照组)治疗。两组根据性别、年龄和发作频率按1:2的比例配对。HRQoL采用癫痫生活质量-10 (QOLIE-10)、EuroQol视觉模拟量表(EQVAS)和EuroQol-5维量表(EQ5D)进行评估。并对其联合用药进行分析。在231名研究参与者中,33.3%的人接受CNB治疗,19.0%的人接受丙戊酸治疗,17.3%的人接受拉可沙胺治疗,16.4%的人接受左乙拉西坦治疗,13.9%的人接受托吡酯治疗。从基线到12个月的随访,CNB组EQ5D指数评分的改善百分比(32.2%)高于其他asm组(3.2% - 17.5%,p < 0.05)。EQVAS (31% vs. 3.2% - 17.5%)和QOLIE-10 (46.9% vs. 13.4% - 28.2%)的结果相似,p < 0.05。CNB与低剂量氯巴唑联用时表现出更好的癫痫发作控制和HrQoL,并有与SV2A调节剂联用的趋势。结论本研究为局灶性癫痫早期治疗线的CNB与HrQoL升高相关提供了证据。低剂量氯巴唑可与CNB协同作用。与SV2A调制器的组合表现出积极的趋势。
{"title":"Quality of life and synergistic combinations of antiseizure medication in patients treated with cenobamate in early therapy lines for focal-onset seizures","authors":"Yaroslav Winter ,&nbsp;Raya Abou Dargham ,&nbsp;Erik Ellwardt ,&nbsp;Thilo Hammen ,&nbsp;Christoph Massing ,&nbsp;Sarah Gößling ,&nbsp;Marina Flotats-Bastardas ,&nbsp;Sergiu Groppa ,&nbsp;Michael Zemlin ,&nbsp;Christopher Meudt","doi":"10.1016/j.yebeh.2025.110835","DOIUrl":"10.1016/j.yebeh.2025.110835","url":null,"abstract":"<div><h3>Background</h3><div>Quality of life is an important outcome measure for patients with epilepsy (PWE). However, data on health-related quality of life (HRQoL) in PWE treated with cenobamate (CNB), a new antiseizure medication (ASM) that achieves a high level of seizure freedom, is scarce. These data are especially important for evaluating the use of CNB in early therapy lines for focal-onset seizures.</div></div><div><h3>Methods</h3><div>The study population consisted of patients with focal-onset seizures that could not be controlled by fewer than three lifetime ASMs. They began treatment with CNB („CNB group“) or another ASM (controls). Both groups were matched at a ratio of 1:2 based on sex, age, and seizure frequency. HRQoL was evaluated using the Quality of Life in Epilepsy-10 (QOLIE-10), the EuroQol Visual Analogue Scale (EQVAS), and the EuroQol-5-Dimensions (EQ5D) questionnaire. The drug combinations were analyzed.</div></div><div><h3>Results</h3><div>Of the 231 study participants, 33.3 % were treated with CNB, 19.0 % with valproate, 17.3 % with lacosamide, 16.4 % with levetiracetam, and 13.9 % with topiramate. The percentage improvement in the EQ5D index score from baseline to the 12-month follow-up was higher for CNB (32.2 %) than for other ASMs (3.2 %–17.5 %, p &lt; 0.05). Similar results were obtained for EQVAS (31 % vs. 3.2 %–17.5 %) and QOLIE-10 (46.9 % vs. 13.4 %–28.2 %), p &lt; 0.05. CNB demonstrated superior seizure control and HrQoL when combined with low-dose clobazam and a trend for combination with SV2A modulators.</div></div><div><h3>Conclusion</h3><div>Our study provides evidence that CNB in early therapy lines for focal-onset seizures is associated with an increased HrQoL. Low-dose clobazam can wok synergistically with CNB. The combination with SV2A modulators showed a positive trend.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110835"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145735016","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}
引用次数: 0
Transfer of Finnish adolescents with epilepsy to adult care: a population-based study 芬兰青少年癫痫患者转至成人护理:一项基于人群的研究
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-11 DOI: 10.1016/j.yebeh.2025.110856
Matti L Sillanpää , Vivian Reinhold , Leevi Toivonen , Peter R Camfield

Background

Transferring adolescents with epilepsy (AWE) to adult care is a complex process, yet there is limited data on its overall epidemiology and clinical implications.

Objective

This population-based study analyzes the long-term clinical trajectories and predictors of transfer among AWE within a robust Finnish healthcare system.

Methods

A cohort of 439 AWE was followed for a mean of 10.28 years. Transfer outcomes, care settings, and long-term seizure control were evaluated for patients reaching transfer age, focusing on predictors of public adult specialty care.

Results

Of 222 AWE reaching transfer age, 189 (85.1 %) were transferred to adult services, with 64 % entering university hospital care. Remission was achieved in 23 % during extended follow-up, while 27 % remained drug-resistant. Multivariable analysis identified developmental and epileptic encephalopathy, specific developmental disorders, and comorbidities such as asthma, allergies, and obesity as significant predictors for public adult specialty care. Notably, changing the transfer age from 16 to 18 years had no significant effect on transfer rates.

Conclusion

Transfer to adult specialty care affects the vast majority of AWE, imposing considerable demands on public health systems. These findings underscore the need for early identification of high-risk patients to inform resource planning and individualized care strategies.
背景:将青少年癫痫患者(AWE)转移到成人护理是一个复杂的过程,但有关其总体流行病学和临床意义的数据有限。目的:本研究以人群为基础,分析芬兰健康医疗体系中AWE转移的长期临床轨迹和预测因素。方法对439例患者进行随访,平均随访10.28年。对达到转院年龄的患者的转院结果、护理环境和长期癫痫控制进行评估,重点关注公共成人专科护理的预测因素。结果222名达到转院年龄的学生中,189名(85.1%)转入成人服务,其中64%进入大学医院。在延长随访期间,23%的患者获得缓解,而27%的患者仍然耐药。多变量分析确定发育性和癫痫性脑病、特定发育障碍和合并症(如哮喘、过敏和肥胖)是公共成人专科护理的重要预测因素。值得注意的是,将转会年龄从16岁改为18岁对转会率没有显著影响。结论转入成人专科护理影响了绝大多数AWE患者,对公共卫生系统提出了相当大的需求。这些发现强调了早期识别高危患者的必要性,以便为资源规划和个性化护理策略提供信息。
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引用次数: 0
Post-vagus nerve stimulation mood and cognitive burden in dual epileptic–functional seizure patients 迷走神经刺激后癫痫-功能双重发作患者的情绪和认知负担
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-02 DOI: 10.1016/j.yebeh.2025.110837
Vishva Natarajan , Ravi Sandhu , Charles Mazof , Nicole Odom , Jennifer Hong

Objective

To evaluate neuropsychiatric burden in the understudied population of patients with dual diagnoses of epileptic seizures (ES) and functional seizures (FS) who have received vagus nerve stimulation (VNS).

Methods

In this retrospective study, adults with dual diagnoses of ES and FS who underwent VNS at a tertiary care center between 2015 and 2024 were identified via ICD-10 codes and confirmed by video-electroencephalography (VEEG). Propensity score matching generated two control groups: (1) patients with ES only with VNS, and (2) patients with dual ES and FS without VNS. Longitudinal patient-reported outcomes, including seizure frequency, NDDI-E, and the QOLIE-31 Cognitive subscale, were analyzed using time-weighted averaging and nonparametric statistics.

Results

Eight patients with dual ES and FS who received VNS were matched to eight in each control group. The dual-diagnosis patients with VNS implants had significantly higher seizure frequency than those without VNS implants (median seizure frequency = 14.1 vs. 2.2, p = 0.001). Among patients with VNS implants, those with dual diagnoses had significantly greater depressive symptoms (median NDDI-E = 16.4 vs. 8.8, p = 0.015) compared to those with ES alone. Significant differences in cognitive quality of life were not observed.

Significance

Dual-diagnosis patients exhibited higher seizure reporting after VNS therapy compared to those without VNS and higher depressive burden compared to patients with ES alone, patterns that may reflect the underlying severity of FS-related comorbidity. These exploratory results support careful pre-implant counselling and highlight the need for prospective studies with baseline assessments to clarify outcomes in this complex population.
目的评估接受迷走神经刺激(VNS)治疗的癫痫性发作(ES)和功能性发作(FS)双重诊断患者的神经精神负担。方法回顾性研究2015年至2024年间在三级保健中心接受VNS治疗的ES和FS双重诊断的成人,通过ICD-10代码进行识别,并通过视频脑电图(VEEG)进行确认。倾向评分匹配产生两个对照组:(1)仅伴VNS的ES患者和(2)伴VNS的双ES和FS患者。纵向患者报告的结果,包括癫痫发作频率、NDDI-E和QOLIE-31认知量表,采用时间加权平均和非参数统计进行分析。结果8例接受VNS治疗的双ES和FS患者与对照组8例相匹配。双重诊断的VNS植入患者的癫痫发作频率明显高于未植入VNS的患者(中位癫痫发作频率= 14.1比2.2,p = 0.001)。在植入VNS的患者中,与单独植入ES的患者相比,双重诊断的患者抑郁症状明显加重(中位NDDI-E = 16.4 vs. 8.8, p = 0.015)。在认知生活质量方面未观察到显著差异。双重诊断的患者在接受VNS治疗后癫痫发作报告高于未接受VNS治疗的患者,抑郁负担高于单独接受ES治疗的患者,这些模式可能反映了fs相关合并症的潜在严重程度。这些探索性结果支持仔细的植入前咨询,并强调需要进行基线评估的前瞻性研究,以明确这一复杂人群的结果。
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引用次数: 0
期刊
Epilepsy & Behavior
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