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Living with epilepsy: what characterizes the everyday life of adults with epilepsy in Western countries? A systematic synthesis of qualitative studies 癫痫患者生活:西方国家成人癫痫患者日常生活的特点是什么?定性研究的系统综合
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.2025.110828
Ellen Gabrielsen Hjelle , Irma Pinxsterhuis , Unni Sveen , Line Kildal Bragstad

Background

Epilepsy is a complex neurological disease affecting millions worldwide. Beyond seizure management, individuals with epilepsy face significant emotional, cognitive, and social challenges that impact their quality of life and societal participation. This qualitative systematic review explored the lived experiences of adults with epilepsy in Western countries, focusing on their participation in daily life.

Methods

A meta-aggregated synthesis was conducted, guided by the Joanna Briggs Institute’s recommendations. Sixteen qualitative studies published between 2016 and 2024 were included, representing 391 participants and 3,580 online posts.

Results

The three key themes: “Understanding the condition and the need for tailored information”, “self-management and support” and “stigma and the dilemma of disclosure or concealment” encompass multifaceted aspects of living with epilepsy. These include the disruptive and unpredictable nature of epilepsy, the critical role of personalized information in disease management, and the importance of effective coping and self-management strategies. Participants reported challenges such as stigma, discrimination, and difficulties in forming and maintaining relationships. Support from family, peers, and healthcare professionals was identified as critical but often insufficient. Stigma emerged as a pervasive issue, with many concealing their condition to avoid judgment, despite the risks. Public education and peer support were highlighted as essential to reducing stigma and fostering inclusion.

Conclusions

Living with epilepsy requires more than seizure management; it involves navigating a complex interplay of physical, emotional, and social challenges. A comprehensive approach including medication, individualized care, and support for lifestyle adjustments is recommended. Public education is suggested to reduce the stigma associated with epilepsy.
癫痫是一种复杂的神经系统疾病,影响着全世界数百万人。除了癫痫发作管理之外,癫痫患者还面临重大的情感、认知和社会挑战,影响他们的生活质量和社会参与。这一定性系统综述探讨了西方国家成人癫痫患者的生活经历,重点关注他们在日常生活中的参与情况。方法以Joanna Briggs研究所的建议为指导,进行综合分析。该研究纳入了2016年至2024年间发表的16项定性研究,涉及391名参与者和3580篇在线帖子。结果:“了解病情和定制信息的需求”、“自我管理和支持”以及“耻辱和披露或隐瞒的困境”这三个关键主题涵盖了癫痫患者生活的多个方面。其中包括癫痫的破坏性和不可预测性,个性化信息在疾病管理中的关键作用,以及有效应对和自我管理策略的重要性。参与者报告了诸如耻辱、歧视以及在建立和维持关系方面的困难等挑战。来自家庭、同伴和医疗保健专业人员的支持被认为是至关重要的,但往往不够。耻辱感成为一个普遍存在的问题,许多人不顾风险隐瞒自己的病情以避免被评判。会议强调,公共教育和同伴支持对于减少耻辱和促进包容至关重要。结论癫痫患者需要的不仅仅是癫痫发作管理;它涉及到身体、情感和社会挑战的复杂相互作用。建议采用综合方法,包括药物治疗、个体化护理和支持生活方式调整。建议进行公共教育,以减少与癫痫有关的耻辱感。
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引用次数: 0
Driving habits and difficulties in people with epilepsy: A survey 癫痫患者的驾驶习惯和困难:一项调查
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.2025.110824
Lucile Guillermier , Cécile Sabourdy , Emeline Four , Nicolas Mezouar , Laurence Paire-Ficout , Maud Ranchet
Epilepsy is a neurological condition that can interfere with driving abilities through seizures and cognitive impairments. While legal frameworks often regulate driving eligibility, little is known about how people with epilepsy perceive and adapt their driving in everyday life. This study aimed to examine driving habits, self-perceived difficulties, and adaptive behaviors in people with epilepsy compared to a control group. A total of 665 participants (103 individuals with epilepsy and 562 individuals without epilepsy) completed an online questionnaire covering driving habits, avoidance behaviors, and compensatory strategies. Statistical analyses were conducted to compare responses between groups. Contrary to expectations, individuals with epilepsy do not report more driving difficulties than controls. On the other hand, they appear to have more avoidance behavior and compensatory strategies. They were more likely to avoid certain situations (e.g., night driving, long trips) and to implement proactive adjustments (e.g., driving only when feeling well, taking shorter trips). People with epilepsy appear to implement self-regulation strategies that reduce their exposure to difficult driving conditions. These strategies likely help maintain safe driving practices but may also restrict mobility and autonomy. Given that these data are based on self-reports the interpretation of the results must be cautious, particularly since people with epilepsy did not report more difficulties than controls. We propose two interpretations (i.e., adaptive hypothesis and anticipatory hypothesis) that are not mutually exclusive. Future studies should integrate these perspectives with objective assessments to provide more robust evidence for clinical and regulatory recommendations.
癫痫是一种神经系统疾病,可以通过癫痫发作和认知障碍来干扰驾驶能力。虽然法律框架经常规范驾驶资格,但人们对癫痫患者如何在日常生活中感知和适应驾驶知之甚少。本研究旨在研究癫痫患者与对照组相比的驾驶习惯、自我认知困难和适应行为。共有665名参与者(103名癫痫患者和562名非癫痫患者)完成了一份涵盖驾驶习惯、回避行为和补偿策略的在线问卷。通过统计学分析比较各组间的反应。与预期相反,癫痫患者报告的驾驶困难并不比对照组多。另一方面,他们似乎有更多的回避行为和补偿策略。他们更有可能避免某些情况(例如,夜间驾驶,长途旅行),并实施主动调整(例如,仅在感觉良好时驾驶,短途旅行)。癫痫患者似乎采取了自我调节策略,减少了他们在困难驾驶条件下的暴露。这些策略可能有助于保持安全驾驶,但也可能限制机动性和自主性。鉴于这些数据是基于自我报告,对结果的解释必须谨慎,特别是因为癫痫患者报告的困难并不比对照组多。我们提出了两种并不相互排斥的解释(即适应性假设和预期假设)。未来的研究应将这些观点与客观评估结合起来,为临床和监管建议提供更有力的证据。
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引用次数: 0
Social cognition after epilepsy surgery in temporal lobe epilepsy: A long-term follow-up 颞叶癫痫手术后的社会认知:长期随访
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-05 DOI: 10.1016/j.yebeh.2025.110839
Martin Simcik , Ross Andel , Viktoria Pytelova , Alena Javurkova , Jakub Zalud , Adam Kalina , Michaela Kalinova , Katerina Stanzelova , Petr Marusic , Jana Amlerova

Background

Previous studies have suggested that social cognition abilities do not change following surgical treatment for temporal lobe epilepsy (TLE). However, the follow-up period in these studies was no longer than 14 months. The present study investigated the long-term effects of epilepsy surgery on social cognition, extending the follow-up period to an average of 12 years (range 7–15 years).

Methods

We assessed 24 patients with drug-resistant TLE (mean age = 37 ± 11 years; 14 males) who underwent temporal lobe resection. Social cognition was measured using the Emotion Recognition Test (ERT, measuring emotion recognition) and the Faux-Pas Test (FPT, measuring Theory of Mind). Linear mixed-effects models accounted for repeated measures. Baseline scores for both ERT and FPT were standardized as Z-scores.

Results

ERT scores remained stable over time (estimate = 0.01, p = 0.405), while FPT performance declined gradually (estimate = −0.04, p = 0.009). Later epilepsy onset predicted higher initial FPT scores (estimate = 0.02, p = 0.036) but faster decline (estimate = −0.01, p = 0.013). Epilepsy duration, side, IQ, sex, and depressive symptoms had no significant effect.

Conclusion

While ERT appeared to remain stable over the extended period, FPT showed a gradual decline across the post-surgery follow-up independent of age. Later age at epilepsy onset was associated with steeper FPT deterioration. Our results extend previous findings, confirming stability in emotion recognition and suggesting decline in recognition of Faux-Pax after epilepsy surgery.
背景以往的研究表明,颞叶癫痫(TLE)手术治疗后社会认知能力没有改变。然而,这些研究的随访期不超过14个月。本研究调查了癫痫手术对社会认知的长期影响,将随访期延长至平均12年(范围7-15年)。方法对24例接受颞叶切除术的耐药TLE患者(平均年龄37±11岁,男性14例)进行评估。社会认知测试采用情绪识别测试(ERT,测量情绪识别)和失态行为测试(FPT,测量心理理论)。线性混合效应模型解释了重复测量。ERT和FPT的基线得分均标准化为z分数。结果sert评分随时间变化保持稳定(估计值= 0.01,p = 0.405),而FPT评分逐渐下降(估计值= - 0.04,p = 0.009)。癫痫发作越晚,初始FPT评分越高(估计值= 0.02,p = 0.036),但下降越快(估计值= - 0.01,p = 0.013)。癫痫持续时间、症状、智商、性别和抑郁症状无显著影响。结论ERT在较长时间内保持稳定,而FPT在术后随访中逐渐下降,与年龄无关。癫痫发病年龄越晚,FPT恶化越严重。我们的研究结果扩展了先前的发现,证实了情绪识别的稳定性,并表明癫痫手术后对虚假情绪的识别能力下降。
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引用次数: 0
Dose adjustment of the anti-seizure medications levetiracetam and lamotrigine during the postpartum period. Schedule plan, safety and efficacy 产后抗癫痫药物左乙拉西坦和拉莫三嗪的剂量调整。时间表计划,安全性和有效性
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-12 DOI: 10.1016/j.yebeh.2025.110858
Nadejda Khmelev , Firas Fahoum , Lilach Goldstein

Introduction

Lamotrigine (LTG) and Levetiracetam (LEV) are anti-seizure medications (ASMs) widely used for treatment of women with epilepsy (WWE) of childbearing age due to low teratogenic potential. Physiological changes during gestation results in enhanced clearance. Drug level monitoring and frequent dose adjustments are required to avoid decline in serum levels and compromised seizure control. Postpartum, physiological changes reverse and ASM clearance trends back to pre-pregnancy rate. Rapid metabolic changes make drug level monitoring and dose adjustments challenging. A delay in dose decrement could result in toxicity. The optimal postpartum dose reduction rate hasn’t been established.

Methods

We retrospectively examined medical records of pregnant WWE followed at Tel Aviv Sourasky Medical Center from 2018 to 2023. Initially, patients were instructed to continue therapeutic drug monitoring (TDM) postpartum. Starting October 2020, an empiric taper regimen was implemented with dose adjustments scheduled 1, 7, and 21 days postpartum. Individualized regimens were provided during last prenatal visit. We recorded ASM dose, serum levels, seizure frequency, and side effects.

Results

Eighty-one pregnancies in 75 WWE were included. Forty-two were treated with LEV, 35 with LTG, and 4 with both. In 24 pregnancies patients continued TDM postpartum, and 57 followed empiric protocol. Among seizure-free WWE before and during pregnancy, none of 44 in the empiric group and 2 of 16 in TDM group had postpartum seizures. Side effects occurred in 6 of 54 empiric group and 5 of 21 TDM group.

Conclusion

Empiric postpartum tapering was not linked to increased seizure risk and was well tolerated.
拉莫三嗪(LTG)和左乙拉西坦(LEV)是抗癫痫药物(ASMs),因致畸潜能低而广泛用于育龄妇女癫痫(WWE)的治疗。妊娠期间的生理变化导致清除能力增强。需要监测药物水平和频繁调整剂量,以避免血清水平下降和癫痫发作控制受损。产后,生理变化逆转,ASM清除率趋势恢复到孕前水平。快速的代谢变化使药物水平监测和剂量调整具有挑战性。剂量减量的延迟可能导致毒性。产后最佳减量率尚未确定。方法回顾性分析2018年至2023年在特拉维夫苏拉斯基医疗中心随访的妊娠WWE病历。最初,患者被指示继续产后治疗药物监测(TDM)。从2020年10月开始,实施经验性减量方案,并在产后1、7和21天进行剂量调整。在最后一次产前检查中提供个性化方案。我们记录了ASM的剂量、血清水平、癫痫发作频率和副作用。结果75例WWE共81例妊娠。LEV治疗42例,LTG治疗35例,两种治疗4例。24例妊娠后继续TDM, 57例遵循经验方案。在孕前和孕期无癫痫发作的WWE中,经验组44例无产后癫痫发作,TDM组16例有2例产后癫痫发作。54例经验组中6例出现不良反应,21例TDM组中5例出现不良反应。结论经年累月的产后减量与癫痫发作风险增加无关,且耐受性良好。
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引用次数: 0
Quality of life measure for children with Epilepsy: A psychometric evaluation of the Italian version 癫痫儿童的生活质量测量:意大利版的心理测量评估
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.2025.110857
Carlotta Tagliaferro , Elena Cavallini , Pietro Cappelletto , Chloe Lau , Martina Preti , Claudia Marino , Simona Pellacani , Gabriel M. Ronen , Francesca Chiesi , Carmen Barba

Objective

To report on the Italian validation of the Child Epilepsy Quality of Life Questionnaire (CHEQOL-25), including both the child self-report and parent-proxy versions.

Methods

The validation procedure was conducted at a single Italian centre between July 2024 and July 2025, involving 252 children with epilepsy and their parents. A forward–backward translation process was carried out in line with established best-practice guidelines. Data collection included family interviews and medical chart reviews. Psychometric evaluation covered reliability and validity.

Results

All items exceeded the accepted thresholds (≥ 0.78) for both content validity and comprehensibility. The factor structure closely replicated the original five-factor model, with certain items showing stronger loadings than the original study within the Interpersonal/Social and Intrapersonal/Emotional domains in both related versions. The Secrecy factor showed greater variability (h2 = 0.06–.83), possibly reflecting differences in parental interpretation or their sensitivity to the epilepsy concealment. Children who engaged in playful activities scored higher across most subscales, particularly in the Interpersonal/Social and the Quest for Normality domains of the self-report version. Importantly, children not receiving school support reported higher scores across several subscales, suggesting fewer perceived psychosocial challenges. Agreement between child self-reports and parent proxy-reports ranged from moderate to strong (ICC = 0.53–.71).

Conclusions

The Italian version of the CHEQOL-25 measure demonstrates strong psychometric properties (consistent with the original version) and reinforces the value of assessing quality of life in children with epilepsy across diverse cultural contexts.
目的报告儿童癫痫生活质量问卷(CHEQOL-25)的意大利验证情况,包括儿童自述版和家长代理版。方法验证程序于2024年7月至2025年7月在意大利一个中心进行,涉及252名癫痫患儿及其父母。按照既定的最佳实践准则进行了向前向后翻译过程。数据收集包括家庭访谈和病历回顾。心理测量评估包括信度和效度。结果所有条目的内容效度和可理解性均超过可接受阈值(≥0.78)。因子结构与原始的五因子模型非常相似,在两个相关版本中,某些项目在人际/社会和内省/情感领域显示出比原始研究更强的负荷。保密因子表现出较大的变异性(h2 = 0.06 -)。83),可能反映了父母的解释差异或他们对癫痫隐瞒的敏感性。参与游戏活动的儿童在大多数子量表中得分更高,特别是在自我报告版本的人际/社会和追求正常领域。重要的是,没有得到学校支持的儿童在几个子量表上的得分更高,这表明他们感受到的心理社会挑战更少。儿童自我报告和家长代理报告之间的一致性从中等到强(ICC = 0.53 - 0.71)。结论意大利版CHEQOL-25量表显示出强大的心理测量特性(与原始版本一致),并加强了评估不同文化背景下癫痫患儿生活质量的价值。
{"title":"Quality of life measure for children with Epilepsy: A psychometric evaluation of the Italian version","authors":"Carlotta Tagliaferro ,&nbsp;Elena Cavallini ,&nbsp;Pietro Cappelletto ,&nbsp;Chloe Lau ,&nbsp;Martina Preti ,&nbsp;Claudia Marino ,&nbsp;Simona Pellacani ,&nbsp;Gabriel M. Ronen ,&nbsp;Francesca Chiesi ,&nbsp;Carmen Barba","doi":"10.1016/j.yebeh.2025.110857","DOIUrl":"10.1016/j.yebeh.2025.110857","url":null,"abstract":"<div><h3>Objective</h3><div>To report on the Italian validation of the Child Epilepsy Quality of Life Questionnaire (CHEQOL-25), including both the child self-report and parent-proxy versions.</div></div><div><h3>Methods</h3><div>The validation procedure was conducted at a single Italian centre between July 2024 and July 2025, involving 252 children with epilepsy and their parents. A forward–backward translation process was carried out in line with established best-practice guidelines. Data collection included family interviews and medical chart reviews. Psychometric evaluation covered reliability and validity.</div></div><div><h3>Results</h3><div>All items exceeded the accepted thresholds (≥ 0.78) for both content validity and comprehensibility. The factor structure closely replicated the original five-factor model, with certain items showing stronger loadings than the original study within the <em>Interpersonal/Social</em> and <em>Intrapersonal/Emotional</em> domains in both related versions. The <em>Secrecy</em> factor showed greater variability (h<sup>2</sup> = 0.06–.83), possibly reflecting differences in parental interpretation or their sensitivity to the epilepsy concealment. Children who engaged in playful activities scored higher across most subscales, particularly in the <em>Interpersonal/Social</em> and the <em>Quest for Normality</em> domains of the self-report version. Importantly, children not receiving school support reported higher scores across several subscales, suggesting fewer perceived psychosocial challenges. Agreement between child self-reports and parent proxy-reports ranged from moderate to strong (ICC = 0.53–.71).</div></div><div><h3>Conclusions</h3><div>The Italian version of the <em>CHEQOL-25</em> measure demonstrates strong psychometric properties (consistent with the original version) and reinforces the value of assessing quality of life in children with epilepsy across diverse cultural contexts.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110857"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145734944","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
Association between seizure severity and quality of life in focal epilepsy: the mediating role of sleep quality 局灶性癫痫发作严重程度与生活质量的关系:睡眠质量的中介作用
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.2025.110832
Huiting Wu , Yingying Zhou , Chunmei Wu , Xu Zhao , Xiaoyan Liu , Suiqiang Zhu , Shanshan Huang

Objective

The association between sleep quality and quality of life (QOL) in patients with focal epilepsy remains poorly understood. This study aimed to evaluate sleep quality within this population and investigate its mediating effect on QOL.

Methods

This cross-sectional study enrolled 161 adult patients with focal epilepsy. Sleep quality, seizure severity, and QOL were assessed using the Pittsburgh Sleep Quality Index (PSQI), Liverpool Seizure Severity Scale 2.0 (LSSS 2.0), and Quality of Life in Epilepsy-31 (QOLIE-31) inventory, respectively. Logistic regression analysis was conducted to identify factors associated with sleep quality. Correlation and mediation analyses were performed to examine the relationships between sleep quality, seizure severity, and QOL.

Results

The mean overall QOLIE-31 score was 65.57 ± 14.22. Poor sleep quality (PSQI > 5) was identified in 68 patients (42.24 %). Longer disease duration (OR = 2.326, 95 %CI: 1.151 to 4.698, P = 0.019) and higher seizure severity (OR = 1.029, 95 %CI: 1.002 to 1.056, P = 0.029) were independent factors significantly associated with poor sleep quality. Both sleep quality and seizure severity showed significant correlations with QOL. Mediation analysis confirmed the significant mediating role of sleep quality in the relationship between seizure severity and QOL (β = −0.131, 95 %CI: −0.207 to −0.065).

Conclusion

This study demonstrated a significant association between greater seizure severity and reduced QOL in patients with focal epilepsy, with sleep quality acting as a significant mediator. These findings underscore the significance of addressing sleep disturbances and integrating sleep management into comprehensive interventions for focal epilepsy.
目的局灶性癫痫患者睡眠质量与生活质量(QOL)的关系尚不清楚。本研究旨在评估该人群的睡眠质量,并探讨其对生活质量的中介作用。方法本横断面研究纳入161例局灶性癫痫成年患者。分别采用匹兹堡睡眠质量指数(PSQI)、利物浦癫痫发作严重程度量表2.0 (LSSS 2.0)和癫痫-31生活质量量表(QOLIE-31)评估睡眠质量、癫痫发作严重程度和生活质量。对影响睡眠质量的因素进行Logistic回归分析。对睡眠质量、癫痫发作严重程度和生活质量之间的关系进行相关分析和中介分析。结果QOLIE-31平均总分为65.57±14.22分。68例(42.24%)患者存在睡眠质量差(PSQI > 5)。较长的病程(OR = 2.326, 95% CI: 1.151 ~ 4.698, P = 0.019)和较高的癫痫发作严重程度(OR = 1.029, 95% CI: 1.002 ~ 1.056, P = 0.029)是与睡眠质量差显著相关的独立因素。睡眠质量和癫痫发作严重程度与生活质量均有显著相关性。中介分析证实睡眠质量在癫痫发作严重程度与生活质量的关系中起显著中介作用(β = - 0.131, 95% CI: - 0.207 ~ - 0.065)。结论本研究表明局灶性癫痫患者发作严重程度加重与生活质量降低之间存在显著关联,睡眠质量在其中起重要中介作用。这些发现强调了解决睡眠障碍和将睡眠管理纳入局灶性癫痫综合干预措施的重要性。
{"title":"Association between seizure severity and quality of life in focal epilepsy: the mediating role of sleep quality","authors":"Huiting Wu ,&nbsp;Yingying Zhou ,&nbsp;Chunmei Wu ,&nbsp;Xu Zhao ,&nbsp;Xiaoyan Liu ,&nbsp;Suiqiang Zhu ,&nbsp;Shanshan Huang","doi":"10.1016/j.yebeh.2025.110832","DOIUrl":"10.1016/j.yebeh.2025.110832","url":null,"abstract":"<div><h3>Objective</h3><div>The association between sleep quality and quality of life (QOL) in patients with focal epilepsy remains poorly understood. This study aimed to evaluate sleep quality within this population and investigate its mediating effect on QOL.</div></div><div><h3>Methods</h3><div>This cross-sectional study enrolled 161 adult patients with focal epilepsy. Sleep quality, seizure severity, and QOL were assessed using the Pittsburgh Sleep Quality Index (PSQI), Liverpool Seizure Severity Scale 2.0 (LSSS 2.0), and Quality of Life in Epilepsy-31 (QOLIE-31) inventory, respectively. Logistic regression analysis was conducted to identify factors associated with sleep quality. Correlation and mediation analyses were performed to examine the relationships between sleep quality, seizure severity, and QOL.</div></div><div><h3>Results</h3><div>The mean overall QOLIE-31 score was 65.57 ± 14.22. Poor sleep quality (PSQI &gt; 5) was identified in 68 patients (42.24 %). Longer disease duration (OR = 2.326, 95 %CI: 1.151 to 4.698, <em>P</em> = 0.019) and higher seizure severity (OR = 1.029, 95 %CI: 1.002 to 1.056, <em>P</em> = 0.029) were independent factors significantly associated with poor sleep quality. Both sleep quality and seizure severity showed significant correlations with QOL. Mediation analysis confirmed the significant mediating role of sleep quality in the relationship between seizure severity and QOL (β = −0.131, 95 %CI: −0.207 to −0.065).</div></div><div><h3>Conclusion</h3><div>This study demonstrated a significant association between greater seizure severity and reduced QOL in patients with focal epilepsy, with sleep quality acting as a significant mediator. These findings underscore the significance of addressing sleep disturbances and integrating sleep management into comprehensive interventions for focal epilepsy.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110832"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145735019","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
Diagnostic delay and associated clinical factors in a sample of South African patients with functional seizures 诊断延迟和相关的临床因素在南非患者的样本与功能性癫痫发作
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.2025.110843
Gabriele Vilyte , Victoria Ives-Deliperi , James Butler , Chrisma Pretorius

Purpose

Functional seizures (FS) are often associated with substantial diagnostic delay. This can impact patients’ quality of life, delay appropriate treatment and cause iatrogenic harms. The delay is also hypothesised to be worse in low- to middle-income countries (LMICs), but there is a dearth of information on the extent and reasons for this in LMIC settings, such as South Africa.

Methods

We used retrospective medical chart data from 368 consecutive video-EEG confirmed patients with FS from a private (n = 301) and a public (n=67) sector epilepsy monitoring units (EMUs). Data on 39 clinical factors were used to test for association with delay to documented FS diagnosis.

Results

The overall mean diagnostic delay was 5 years, with a median of 2 years (IQR 0.58, 6). In the private hospital group, the mean delay was 4.7 years, compared to 7.5 years in the public hospital group. Of the 39 studied clinical factors, the use of antiseizure medications (ASMs) emerged as the most important determinant of diagnostic delay in our studied settings. Current ASM use was associated with a median diagnostic delay of 0.6 years (95 % CI 0.10, 1.10) per additional ASM at the private hospital and 3 years (95 % CI 1.03, 4.97) at the public hospital.

Conclusion

This study is the first in South Africa to investigate the clinical factors associated with delayed diagnosis in FS. The study highlighted particularly long delays in the public sector. Current and repeated ASM use emerged as the key contributors in the two hospitals, highlighting the need for early referral in the face of multiple ASM failures.
目的:功能性癫痫发作(FS)通常与诊断延误有关。这可能影响患者的生活质量,延误适当的治疗,并造成医源性伤害。在低收入和中等收入国家(LMICs),这种延迟也被假设为更严重,但是在低收入和中等收入国家(如南非),缺乏关于这种情况的程度和原因的信息。方法回顾性分析368例连续视频脑电图确诊的FS患者的病历资料,这些患者分别来自私营癫痫监测单位(301例)和公立癫痫监测单位(67例)。39个临床因素的数据被用来测试延迟确诊FS的相关性。结果总体平均诊断延迟为5年,中位延迟为2年(IQR为0.58,6)。私立医院组的平均延迟时间为4.7年,而公立医院组为7.5年。在研究的39个临床因素中,抗癫痫药物(asm)的使用是我们研究环境中诊断延迟的最重要决定因素。在私立医院,每增加一次ASM,目前使用ASM的中位诊断延迟为0.6年(95% CI 0.10, 1.10);在公立医院,每增加一次ASM的中位诊断延迟为3年(95% CI 1.03, 4.97)。结论本研究是南非首次探讨与FS延迟诊断相关的临床因素。该研究特别强调了公共部门的长期拖延。目前和反复使用ASM是这两家医院的关键因素,这突出了在面对多次ASM失败时早期转诊的必要性。
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引用次数: 0
Genotype–phenotype analysis of pathogenic copy number variations in pediatric epilepsy 小儿癫痫致病性拷贝数变异的基因型-表型分析。
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.2025.110842
Hao Zheng , JiaLi Dai , Miao Xiong , Xiao Xiao , Li Jiang , Yue Hu
To summarize the genotype–phenotype characteristics of pediatric epilepsy with pathogenic copy number variations (CNVs) and explore the potential pathogenic mechanisms of the CNVs, we recruited a cohort of 418 epilepsy patients (age: 0–18 years) from the Children’s Hospital of Chongqing Medical University between June 2016 to June 2024. Patients were evaluated using CNV sequencing (CNV-seq). Functional enrichment for dosage-sensitive genes in the CNVs were performed using ClusterProfiler. Protein–protein interaction (PPI) networks for the proteins encoded by these genes were analyzed using the STRING database. We identified 40 patients carrying at least one pathogenic CNVs [detection rate: 9.57 % (40/418)]. A total of 39 microdeletions and five microduplications were identified, ranging in size from 0.11 Mb to 45.53 Mb. The 16p11.2 microdeletion was the most frequently detected (16/418). Thirty patients presented with comorbidities, including 11 with congenital heart disease and 9 exhibiting distinctive facial dysmorphism. Dosage-sensitive genes were significantly enriched in forebrain development, telencephalon development, and the neuronal cell body. Proteins encoded by these dosage-sensitive genes exhibited extensive interaction networks. In conclusion, CNVs are an important cause of pediatric epilepsy and involve dosage-sensitive genes that may cause disease by affecting cortical development and the neuronal cell body. There is a higher probability of identifying a pathogenic CNV when epilepsy is co-morbid with intellectual disability or other systemic diseases.
为总结小儿癫痫致病性拷贝数变异(CNVs)的基因型-表型特征,探讨CNVs的潜在致病机制,我们于2016年6月至2024年6月在重庆医科大学附属儿童医院招募了418例癫痫患者(年龄0-18岁)。使用CNV测序(CNV-seq)对患者进行评估。使用ClusterProfiler对CNVs中的剂量敏感基因进行功能富集。利用STRING数据库分析了这些基因编码蛋白的蛋白-蛋白相互作用(PPI)网络。我们发现40例患者携带至少一种致病性CNVs[检出率:9.57%(40/418)]。共鉴定出39个微缺失和5个微重复,大小从0.11 Mb到45.53 Mb不等。16p11.2微缺失是检测频率最高的(16/418)。30例患者出现合并症,其中11例患有先天性心脏病,9例表现出明显的面部畸形。剂量敏感基因在前脑发育、端脑发育和神经元细胞体中显著富集。这些剂量敏感基因编码的蛋白质表现出广泛的相互作用网络。综上所述,CNVs是儿童癫痫的重要病因,涉及剂量敏感基因,可能通过影响皮质发育和神经元细胞体引起疾病。当癫痫与智力残疾或其他全身性疾病合并症时,发现致病性CNV的可能性更高。
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引用次数: 0
Regional and environmental differences in public attitudes toward epilepsy in Japan: A Post-hoc analysis of the SAPE-J nationwide survey 日本公众对癫痫态度的地区和环境差异:对SAPE-J全国调查的事后分析。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-14 DOI: 10.1016/j.yebeh.2025.110862
Izumi Kuramochi , Denny Kerkhoff , Takayuki Iwayama , Sayaka Kobayashi , Haruo Yoshimasu , Axel Mayer

Background

Epilepsy-related stigma remains a global concern that hinders treatment adherence and psychosocial well-being. In Japan, negative cultural connotations of epilepsy persist despite medical and legal reforms. However, little is known about how public attitudes toward epilepsy differ across regions or between urban and rural environments within Japan. This study examined regional and environmental variations in prejudice and personal experience related to epilepsy and evaluated whether such differences persist after accounting for sociodemographic factors.

Methods

A nationwide online survey was conducted among 1,000 adults stratified by age, gender, and residence across Japan’s eight major regions. Participants completed the four Caveness Questions (CQs) assessing prejudice toward people with epilepsy (PWE) and four experience-related items. A Prejudice Index (0–4) and Personal Experience Index (0–3) were computed. Two-way ANOVAs tested the effects of region (eight levels) and upbringing environment (urban vs. rural). Multiple regression and sensitivity analyses using z-standardized residuals and generalized linear models (Poisson and negative binomial) were performed to confirm robustness. Pearson’s correlations examined bivariate associations among key variables.

Results

Overall, 33.7 % of respondents expressed resistance to children’s association with PWE, 27.1 % regarded epilepsy as a mental illness, 35.0 % opposed equal employment, and 40.2 % opposed marriage with a person who has seizures. The mean Prejudice Index was 1.36 ± 1.13 (SD), and the mean Experience Index was 0.60 ± 0.95 (SD). Rural upbringing significantly predicted higher prejudice (p = 0.012, η2 = 0.008), whereas regional effects were non-significant after adjustment. Residualized and GLM analyses yielded consistent findings. Greater personal experience correlated with lower prejudice (r = –0.32, p < 0.001), while demographic factors showed minimal associations.

Conclusions

Prejudice toward epilepsy in Japan persists at moderate levels, with roughly one in three to four adults endorsing at least one discriminatory attitude. The findings indicate that stigma is shaped more by upbringing and experiential factors than by regional location, highlighting the importance of targeted education and contact-based interventions to reduce epilepsy-related prejudice nationwide.
背景:癫痫相关的耻辱感仍然是一个全球关注的问题,它阻碍了治疗依从性和社会心理健康。在日本,尽管进行了医疗和法律改革,但癫痫的负面文化内涵仍然存在。然而,对于日本不同地区或城市和农村环境之间公众对癫痫的态度有何不同,我们知之甚少。本研究调查了与癫痫有关的偏见和个人经历的区域和环境差异,并评估了在考虑社会人口因素后这种差异是否仍然存在。方法:对日本8个主要地区按年龄、性别和居住地分层的1000名成年人进行了全国性的在线调查。参与者完成了四个洞穴性问题(CQs)评估对癫痫患者的偏见(PWE)和四个经验相关的项目。计算偏见指数(0-4)和个人经验指数(0-3)。双向方差分析检验了地区(8个水平)和成长环境(城市与农村)的影响。采用z-标准化残差和广义线性模型(泊松模型和负二项模型)进行多元回归和敏感性分析,以确认稳健性。皮尔逊相关性检验了关键变量之间的双变量关联。结果:总体而言,33.7%的受访者表示反对儿童与PWE联系,27.1%的受访者认为癫痫是一种精神疾病,35.0%的受访者反对平等就业,40.2%的受访者反对与癫痫患者结婚。平均偏见指数为1.36±1.13 (SD),平均体验指数为0.60±0.95 (SD)。农村教养显著预测较高的偏见(p = 0.012, η2 = 0.008),调整后区域效应不显著。残差分析和GLM分析得出了一致的结果。结论:在日本,对癫痫的偏见持续处于中等水平,大约三分之一到四分之一的成年人赞同至少一种歧视态度。研究结果表明,耻辱感更多地是由成长和经验因素造成的,而不是由区域位置造成的,这突出了有针对性的教育和基于接触的干预措施对于减少全国范围内与癫痫相关的偏见的重要性。
{"title":"Regional and environmental differences in public attitudes toward epilepsy in Japan: A Post-hoc analysis of the SAPE-J nationwide survey","authors":"Izumi Kuramochi ,&nbsp;Denny Kerkhoff ,&nbsp;Takayuki Iwayama ,&nbsp;Sayaka Kobayashi ,&nbsp;Haruo Yoshimasu ,&nbsp;Axel Mayer","doi":"10.1016/j.yebeh.2025.110862","DOIUrl":"10.1016/j.yebeh.2025.110862","url":null,"abstract":"<div><h3>Background</h3><div>Epilepsy-related stigma remains a global concern that hinders treatment adherence and psychosocial well-being. In Japan, negative cultural connotations of epilepsy persist despite medical and legal reforms. However, little is known about how public attitudes toward epilepsy differ across regions or between urban and rural environments within Japan. This study examined regional and environmental variations in prejudice and personal experience related to epilepsy and evaluated whether such differences persist after accounting for sociodemographic factors.</div></div><div><h3>Methods</h3><div>A nationwide online survey was conducted among 1,000 adults stratified by age, gender, and residence across Japan’s eight major regions. Participants completed the four Caveness Questions (CQs) assessing prejudice toward people with epilepsy (PWE) and four experience-related items. A Prejudice Index (0–4) and Personal Experience Index (0–3) were computed. Two-way ANOVAs tested the effects of region (eight levels) and upbringing environment (urban vs. rural). Multiple regression and sensitivity analyses using z-standardized residuals and generalized linear models (Poisson and negative binomial) were performed to confirm robustness. Pearson’s correlations examined bivariate associations among key variables.</div></div><div><h3>Results</h3><div>Overall, 33.7 % of respondents expressed resistance to children’s association with PWE, 27.1 % regarded epilepsy as a mental illness, 35.0 % opposed equal employment, and 40.2 % opposed marriage with a person who has seizures. The mean Prejudice Index was 1.36 ± 1.13 (SD), and the mean Experience Index was 0.60 ± 0.95 (SD). Rural upbringing significantly predicted higher prejudice (p = 0.012, η<sup>2</sup> = 0.008), whereas regional effects were non-significant after adjustment. Residualized and GLM analyses yielded consistent findings. Greater personal experience correlated with lower prejudice (r = –0.32, p &lt; 0.001), while demographic factors showed minimal associations.</div></div><div><h3>Conclusions</h3><div>Prejudice toward epilepsy in Japan persists at moderate levels, with roughly one in three to four adults endorsing at least one discriminatory attitude. The findings indicate that stigma is shaped more by upbringing and experiential factors than by regional location, highlighting the importance of targeted education and contact-based interventions to reduce epilepsy-related prejudice nationwide.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110862"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145762256","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
The influences of guilt and shame on anger in patients with concurrent psychogenic Non-Epileptic seizures and PTSD: The mediating role of frustration intolerance 心因性非癫痫性发作合并PTSD患者的内疚感和羞耻感对愤怒的影响:挫折不耐受的中介作用
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2026-02-01 Epub Date: 2025-12-17 DOI: 10.1016/j.yebeh.2025.110860
Mahdi Amani , Siamak Khodarahimi , Belgheis Beit-Mashal , Amir Karami , Nasrollah Mazraeh , Mojtaba Rahimian Bougar , Maeda Hesam
Research indicates that emotions such as anger, guilt, shame, and difficulty tolerating frustration can contribute to harmful behaviors in individuals experiencing both functional/dissociative seizures (FDSs) and post-traumatic stress disorder (PTSD). This study examined the association of guilt and shame with anger through the mediating role of frustration intolerance in patients with simultaneous FDSs and PTSD. The clinical sample of this study included 150 patients with coexisting FDSs and PTSD who were selected using a convenience sampling method in a descriptive study design. The data were collected using the State-Trait Anger Expression Inventory-2nd Edition (STAXI-2), the Guilt and Shame Proneness scale (GASP), and the Frustration Discomfort Scale (FDS). The analysis showed that guilt, shame, and frustration intolerance explained 91.6 % of anger variance among patients with FDSs and PTSD. The findings established that both shame and frustration intolerance are significantly associated with anger. There was no significant direct relationship between guilt and anger. Nevertheless, guilt and shame have significant positive indirect relationships with anger, through the mediating role of frustration intolerance. This study presents a fitted model for the direct and indirect associations between guilt and shame with anger, about the mediating role of frustration intolerance. These results have practical implications for interventions and community-based programs for patients with FDSs and PTSD.
研究表明,愤怒、内疚、羞耻和难以忍受挫折等情绪会导致患有功能性/解离性癫痫发作(FDSs)和创伤后应激障碍(PTSD)的个体产生有害行为。本研究通过挫折不耐受在同时伴有fds和PTSD患者中的中介作用,考察了内疚、羞耻与愤怒的关系。本研究的临床样本采用描述性研究设计,采用方便抽样方法选择150例fds和PTSD共存的患者。采用状态-特质愤怒表达量表第二版(STAXI-2)、内疚和羞耻倾向量表(GASP)和挫折不适量表(FDS)收集数据。分析表明,内疚、羞耻和挫折耐受解释了fds和PTSD患者中91.6%的愤怒差异。研究结果表明,羞耻感和挫折感和忍耐力都与愤怒密切相关。内疚和愤怒之间没有明显的直接关系。然而,内疚感和羞耻感通过挫折不容忍的中介作用与愤怒有显著的正间接关系。本研究提出了一个合适的模型,直接和间接关联的内疚和羞耻与愤怒,关于中介作用的挫折不容忍。这些结果对fds和PTSD患者的干预和社区项目具有实际意义。
{"title":"The influences of guilt and shame on anger in patients with concurrent psychogenic Non-Epileptic seizures and PTSD: The mediating role of frustration intolerance","authors":"Mahdi Amani ,&nbsp;Siamak Khodarahimi ,&nbsp;Belgheis Beit-Mashal ,&nbsp;Amir Karami ,&nbsp;Nasrollah Mazraeh ,&nbsp;Mojtaba Rahimian Bougar ,&nbsp;Maeda Hesam","doi":"10.1016/j.yebeh.2025.110860","DOIUrl":"10.1016/j.yebeh.2025.110860","url":null,"abstract":"<div><div>Research indicates that emotions such as anger, guilt, shame, and difficulty tolerating frustration can contribute to harmful behaviors in individuals experiencing both functional/dissociative seizures (FDSs) and post-traumatic stress disorder (PTSD). This study examined the association of guilt and shame with anger through the mediating role of frustration intolerance in patients with simultaneous FDSs and PTSD. The clinical sample of this study included 150 patients with coexisting FDSs and PTSD who were selected using a convenience sampling method in a descriptive study design. The data were collected using the State-Trait Anger Expression Inventory-2nd Edition (STAXI-2), the Guilt and Shame Proneness scale (GASP), and the Frustration Discomfort Scale (FDS). The analysis showed that guilt, shame, and frustration intolerance explained 91.6 % of anger variance among patients with FDSs and PTSD. The findings established that both shame and frustration intolerance are significantly associated with anger. There was no significant direct relationship between guilt and anger. Nevertheless, guilt and shame have significant positive indirect relationships with anger, through the mediating role of frustration intolerance. This study presents a fitted model for the direct and indirect associations between guilt and shame with anger, about the mediating role of frustration intolerance. These results have practical implications for interventions and community-based programs for patients with FDSs and PTSD.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"175 ","pages":"Article 110860"},"PeriodicalIF":2.3,"publicationDate":"2026-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145780573","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
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Epilepsy & Behavior
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