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Navigating life after New-onset refractory status epilepticus (NORSE) and Febrile infection-related epilepsy syndrome (FIRES): Insights from caregiver and patient interviews. 新发难治性癫痫持续状态(NORSE)和发热性感染相关癫痫综合征(FIRES)后的生活导航:来自护理人员和患者访谈的见解
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-30 DOI: 10.1016/j.yebeh.2024.110236
Krista Eschbach, Julia Reedy, Teneille Gofton, Margaret Gopaul, Raquel Farias-Moeller, Marissa Kellogg, Kelly Knupp, Lawrence J Hirsch, Nora Wong, Brook Dorsey Holliman

Objective: To describe the lived experience of patients with NORSE and explore quality of life (QOL) for patients and their caregivers.

Background: NORSE is a rare condition characterized by refractory status epilepticus, often of unknown cause, in a previously neurologically healthy individual. Febrile infection-related epilepsy syndrome (FIRES) is a subset of NORSE. NORSE is associated with a risk of mortality, acute morbidity, and neurocognitive sequela with limited data about the long-term impacts.

Methods: We conducted in-depth individual or dyadic semi-structured interviews with patients and caregivers. Interviews explored the long-term experiences after NORSE and its impacts on patient and caregiver QOL. Data were analyzed using a thematic content analysis approach.

Results: Fourteen interviews, comprising 5 patients and 15 caregivers, were completed between April 2023 - February 2024. The median age at NORSE onset was 17 years (IQR: 11.00 - 20.25) with a median of 5.60 years (IQR: 3.88 - 8.50) since onset. While experiences varied based on NORSE outcomes and time since onset, we identified the following themes: 1) Seizures, medication side effects, and comorbid health concerns impact patient independence and QOL; 2) Mental and behavioral health concerns compounded by loneliness and isolation impact patient QOL; 3) Friend and family relationship changes impact patient social and emotional QOL; 4) Family members take on care of the patient and experience significant life changes.

Conclusion: NORSE has significant life-altering impacts on patients and caregivers. These findings highlight a need to evaluate outcomes and provide support that extends beyond seizure management.

目的:描述NORSE患者的生活体验,探讨患者及其护理人员的生活质量。背景:NORSE是一种罕见的疾病,其特征是难治性癫痫持续状态,通常原因不明,发生在以前神经健康的个体中。发热性感染相关癫痫综合征(FIRES)是NORSE的一个子集。NORSE与死亡率、急性发病率和神经认知后遗症的风险相关,但有关其长期影响的数据有限。方法:我们对患者和护理人员进行了深入的个人或二元半结构化访谈。访谈探讨了NORSE后的长期经验及其对患者和护理人员生活质量的影响。数据分析采用主题内容分析方法。结果:在2023年4月至2024年2月期间完成了14次访谈,包括5名患者和15名护理人员。NORSE发病的中位年龄为17岁(IQR: 11.00 - 20.25),自发病以来的中位年龄为5.60岁(IQR: 3.88 - 8.50)。虽然经验根据NORSE结果和发病时间而有所不同,但我们确定了以下主题:1)癫痫发作,药物副作用和合并症健康问题影响患者的独立性和生活质量;2)心理和行为健康问题加上孤独和孤立影响患者的生活质量;3)亲友关系变化影响患者社会生活质量和情绪生活质量;4)家庭成员照顾病人,并经历重大的生活变化。结论:NORSE对患者和护理人员有显著的生活改变影响。这些发现强调需要评估结果并提供癫痫发作管理以外的支持。
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引用次数: 0
Development of a nomogram model for early prediction of refractory convulsive status epilepticus. 早期预测难治性惊厥持续状态的nomogram模型的建立。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-30 DOI: 10.1016/j.yebeh.2024.110235
Ying Wang, Zhipeng Liu, Wenting Huang, Shumin Mao, Xu Zhang, Lekai Chen, Wenqiang Fang, Pinglang Hu, Xianchai Hong, Yanru Du, Huiqin Xu

Introduction: We aim to identify risk factors that predict refractory convulsive status epilepticus (RCSE) and to develop a model for early recognition of patients at high risk for RCSE.

Methods: This study involved 200 patients diagnosed with convulsive status epilepticus (CSE), of whom 73 were RCSE and 127 were non-RCSE. Variables included demographic information, lifestyle factors, medical history, comorbidities, clinical symptoms, neuroimaging characteristics, laboratory tests, and nutritional scores. A predictive model was developed through multivariable logistic regression analysis. The model's predictive performance and clinical utility were evaluated using various metrics, including the area under the receiver operating characteristic (AUROC) curve, GiViTI calibration belt, and decision curve analysis (DCA). Additionally, we performed internal five-fold cross-validation for this model.

Results: We developed a nomogram model with six predictors: age ≤ 40 years, prior history of epilepsy, presence of epileptic foci, duration of CSE > 30 min, c-reactive protein > 6 mg/L, and nutritional risk screening ≥ 3 points. Our model has a high AUROC (0.838) and good consistency (P = 0.999). In DCA, the curve of our model exhibits a positive net benefit across the entire range of threshold probabilities. Moreover, our model achieved an accuracy of 0.778 and a Kappa value of 0.519 in the five-fold cross-validation.

Conclusion: We developed an objective, simple and accessible model to assess the risk of RCSE. This model shows promise as a valuable tool for evaluating the individual risk of RCSE.

前言:我们的目的是确定预测难治性惊厥癫痫持续状态(RCSE)的危险因素,并建立一个早期识别高危患者的模型。方法:本研究纳入200例诊断为惊厥性癫痫持续状态(CSE)的患者,其中73例为RCSE, 127例为非RCSE。变量包括人口统计信息、生活方式因素、病史、合并症、临床症状、神经影像学特征、实验室检查和营养评分。通过多变量logistic回归分析建立预测模型。使用各种指标评估模型的预测性能和临床效用,包括受试者工作特征(AUROC)曲线下面积、GiViTI校准带和决策曲线分析(DCA)。此外,我们对该模型进行了内部五重交叉验证。结果:我们建立了一个包含6个预测因素的nomogram模型:年龄≤40岁、既往癫痫史、癫痫灶存在、CSE持续时间> 30 min、c反应蛋白> 6 mg/L、营养风险筛查≥3分。我们的模型AUROC高(0.838),一致性好(P = 0.999)。在DCA中,我们模型的曲线在整个阈值概率范围内显示出正的净效益。此外,我们的模型在五重交叉验证中获得了0.778的精度和0.519的Kappa值。结论:我们建立了一个客观、简单、可及的模型来评估RCSE的风险。该模型有望成为评估RCSE个体风险的有价值的工具。
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引用次数: 0
Knowledge and attitudes of preclinical and clinical medical students toward epilepsy: A cross-sectional study from Turkey. 临床前和临床医学生对癫痫的知识和态度:一项来自土耳其的横断面研究。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-30 DOI: 10.1016/j.yebeh.2024.110242
Fettah Eren, Sumeyye Aydogmus, Furkan Oral, Mine Aleyna Saka, Aslihan Kocatas, Muhammed Mustafa Esmer, Shams Guliyeva, Mustafa Safa Cibik, Salih Emre Gungor, Kemal Oguz, Melike Somuncu, Ceren Cinar, Omer Yazgan, Nesibe Ozkaya, Adem Yildiz

Objective: The aim of this study is to evaluate the epilepsy-related knowledge and attitudes toward epilepsy in medical students. In addition, these parameters were evaluated according to national geographic regions, preclinical and clinical characteristics.

Methods: This study was a cross-sectional, observational design and it was conducted among medical students in a centrally located city, Turkey. Participants were divided into two groups as preclinical (1st, 2nd and 3rd year) and clinical (4th, 5th, and 6th year). Structured questionnaires were used to evaluate knowledge about epilepsy and attitudes toward epilepsy. All items were converted into an online format.

Results: In general, clinical students exhibited better knowledge about epilepsy than preclinical students (p = 0.001), however there was no statistical difference between groups in terms of attitudes toward epilepsy (p = 0.561). In the knowledge scale, the lowest rate was "Brain operation can be effective treatment in some patients" (43.9 %); and in the attitudes scale, the lowest rate was "I would marry someone who has epilepsy" (51.1 %). A weak negative correlation was detected between knowledge and attitudes scores (p = 0.027, r = -0.103). Scores in knowledge about epilepsy and attitude toward epilepsy were not difference in national geographic regions (p = 0.637). Knowledge score was higher in students who witnessed an epileptic seizure (p = 0.001).

Conclusion: The study demonstrated that medical students had insufficient knowledge, mainly about treatment in epilepsy. Negative attitudes, especially about marriage or dating, were detected. Students' perceptions about epilepsy could be improved with training program. Medical regular curriculum should be reorganized about this line.

目的:了解医学生对癫痫的相关知识和态度。此外,根据国家地理区域、临床前和临床特征对这些参数进行评估。方法:本研究采用横断面观察设计,在土耳其一个中心城市的医学生中进行。参与者分为临床前(1、2、3年)和临床(4、5、6年)两组。采用结构化问卷对患者的癫痫知识和对癫痫的态度进行评估。所有项目都被转换成在线格式。结果:总体而言,临床生对癫痫的认知程度高于临床前生(p = 0.001),但两组间对癫痫的态度差异无统计学意义(p = 0.561)。在知识量表中,“脑手术能有效治疗部分患者”的比例最低(43.9%);在态度量表中,“我会嫁给癫痫患者”的比例最低(51.1%)。知识与态度得分呈弱负相关(p = 0.027, r = -0.103)。在癫痫知识和对待癫痫态度得分方面,各国家地理区域差异无统计学意义(p = 0.637)。癫痫发作的学生知识得分较高(p = 0.001)。结论:研究表明医学生对癫痫的认识不足,主要表现在对癫痫治疗的认识不足。消极的态度,尤其是对婚姻和约会的态度。通过培训可以提高学生对癫痫的认识。医学常规课程应围绕这一思路进行重组。
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引用次数: 0
Factors in the development of refractory status epilepticus in status epilepticus patients. 癫痫持续状态患者发生难治性癫痫持续状态的影响因素。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-30 DOI: 10.1016/j.yebeh.2024.110232
Oruç Şahin, Muzaffer Güneş

Objectives: Status epilepticus (SE) is a severe neurological condition associated with a poor prognosis. Refractory status epilepticus (RSE) is a treatment-resistant form of SE with an even worse prognosis. The exact mechanisms underlying the development of RSE are not fully understood. The aim of this study was to investigate the factors contributing to the development of RSE in SE patients and to identify predictors of RSE occurrence.

Methods: This retrospective study was conducted on patients diagnosed with SE and RSE between 2014 and 2024. Demographic information, comorbid conditions, and blood sample data of the patients were recorded for statistical analysis. The statistical analyses used included the Mann-Whitney U test, Chi-square test, Fisher's exact test, ROC curve analysis, and logistic regression.

Results: A total of 82 SE patients were included in the study. Of these, 44 were non-RSE patients (control group), and 38 were RSE patients. Significant differences were observed between the groups in terms of median age (p = 0.001), blood glucose level (p = 0.023), pan-immune inflammation value (PIV) (p = 0.002), Monocyte/Lymphocyte Ratio (MLR) (p = 0.009), Neutrophil/Albumin Ratio (NAR) (p = 0.003), Systemic Immune Inflammation Index (SII) (p = 0.013), Eosinophil/Lymphocyte Ratio (ELR) (p = 0.016), Eosinophil/Neutrophil Ratio (ENR) (p = 0.006), and Eosinophil/Monocyte Ratio (EMR) (p = 0.002). The multivariate logistic regression model identified the presence of arterial hypertension as the only factor significantly associated with the development of RSE (p < 0.001). In the ROC curve analysis, PIV (AUC = 0.696) and NAR (AUC = 0.689) were found to be predictive factors for RSE.

Conclusions: The findings obtained in the current study suggest that systemic inflammation and arterial hypertension may be associated with the progression of SE to RSE. Further research is needed to confirm these findings and integrate them into routine clinical practice.

目的:癫痫持续状态(SE)是一种伴有不良预后的严重神经系统疾病。难治性癫痫持续状态(RSE)是一种难治性的SE,预后更差。RSE发展的确切机制尚不完全清楚。本研究的目的是探讨导致SE患者发生RSE的因素,并确定RSE发生的预测因素。方法:回顾性研究2014 - 2024年诊断为SE和RSE的患者。记录患者的人口学信息、合并症、血样资料进行统计分析。统计分析包括Mann-Whitney U检验、卡方检验、Fisher精确检验、ROC曲线分析和logistic回归。结果:共纳入82例SE患者。其中非RSE患者44例(对照组),RSE患者38例。两组患者的中位年龄(p = 0.001)、血糖水平(p = 0.023)、泛免疫炎症值(PIV) (p = 0.002)、单核细胞/淋巴细胞比(MLR) (p = 0.009)、中性粒细胞/白蛋白比(NAR) (p = 0.003)、全身免疫炎症指数(SII) (p = 0.013)、嗜酸性粒细胞/淋巴细胞比(ELR) (p = 0.016)、嗜酸性粒细胞/中性粒细胞比(ENR) (p = 0.006)、嗜酸性粒细胞/单核细胞比(EMR) (p = 0.002)差异均有统计学意义。多因素logistic回归模型发现,动脉高血压是唯一与RSE发生显著相关的因素(p)。结论:本研究结果提示,全身性炎症和动脉高血压可能与SE向RSE的进展有关。需要进一步的研究来证实这些发现并将其纳入常规临床实践。
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引用次数: 0
"Penosissima, y rigorosa enfermedad" (Most Troublesome and rigorous disease): An analysis of the first medical-moral treatise on epilepsy in Latin America. “最麻烦和最严峻的疾病”:对拉丁美洲第一篇关于癫痫的医学-道德论文的分析。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-30 DOI: 10.1016/j.yebeh.2024.110243
Jaime Carrizosa-Moog

Introduction: The influence of the Enlightenment is evident with the mention of Herman Boerhave. The strong European influence draws attention with minimal expression of the social and medical concepts of pre-Colombian cultures such as the Aztec and Mayan.

Methods: A medical and cultural conceptual analysis of the text "Medical-moral report of the very painful, and rigorous disease of epilepsy" is carried out.

Results: The physicians of the Enlightenment managed to define epilepsy, classify its seizures, explain its causes and pathophysiology, as well as carry out a comprehensive approach. This biomedical concept complemented and coincided with theological explanations of epilepsy.

Conclusion: The Enlightenment was fundamental for a systematized development to explain epilepsy, which in some ways persists until today. The influence of the Aztec and Mayan cultures in this text is minimal.

引言:提到赫尔曼·布尔哈夫,启蒙运动的影响就显而易见了。强烈的欧洲影响吸引了人们的注意,但很少表达阿兹特克和玛雅等前哥伦比亚文化的社会和医学概念。方法:对《癫痫病医德报告》一文进行医学文化概念分析。结果:启蒙运动时期的医生成功地定义了癫痫,对癫痫发作进行了分类,解释了癫痫发作的原因和病理生理,并进行了综合治疗。这一生物医学概念与对癫痫的神学解释相辅相成。结论:启蒙运动是解释癫痫系统发展的基础,在某些方面一直持续到今天。在这本书中,阿兹特克和玛雅文化的影响微乎其微。
{"title":"\"Penosissima, y rigorosa enfermedad\" (Most Troublesome and rigorous disease): An analysis of the first medical-moral treatise on epilepsy in Latin America.","authors":"Jaime Carrizosa-Moog","doi":"10.1016/j.yebeh.2024.110243","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110243","url":null,"abstract":"<p><strong>Introduction: </strong>The influence of the Enlightenment is evident with the mention of Herman Boerhave. The strong European influence draws attention with minimal expression of the social and medical concepts of pre-Colombian cultures such as the Aztec and Mayan.</p><p><strong>Methods: </strong>A medical and cultural conceptual analysis of the text \"Medical-moral report of the very painful, and rigorous disease of epilepsy\" is carried out.</p><p><strong>Results: </strong>The physicians of the Enlightenment managed to define epilepsy, classify its seizures, explain its causes and pathophysiology, as well as carry out a comprehensive approach. This biomedical concept complemented and coincided with theological explanations of epilepsy.</p><p><strong>Conclusion: </strong>The Enlightenment was fundamental for a systematized development to explain epilepsy, which in some ways persists until today. The influence of the Aztec and Mayan cultures in this text is minimal.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110243"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142909425","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
Prevalence and associated factors of caregiving burden among caregivers of adults with epilepsy in Malaysia - A cross-sectional study. 马来西亚成人癫痫患者护理负担的患病率和相关因素-一项横断面研究。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-30 DOI: 10.1016/j.yebeh.2024.110244
Ismayanti Mohd Ismail, Ching Soong Khoo, Layan Ibrahim, Marjorie Jia Yi Ong, Hui Jan Tan, Rozita Hod, Azlin Baharudin, Muhammad Samir Haziq Abd Rahman

Background: There are still insufficient data on caregiver burden among caregivers of adult people with epilepsy (PWE), particularly in Malaysia. This study aims to explore the level of perceived caregiver burden among the informal caregivers caring for PWE, its predicting factors associated with caregiver burden, and the impact of this caregiver burden on their psychological health.

Methods: In this cross-sectional study, caregivers of adult PWE attending the neurology outpatient clinic at Hospital Canselor Tuanku Muhriz (HCTM) completed a comprehensive questionnaire comprising demographic data of participants and care recipients (adult PWE). Epilepsy-related data were obtained from the interview and medical records. Affiliate stigma among caregivers was assessed using Affiliate Stigma Scale (ASS), and psychological impacts were evaluated using Depression Anxiety Stress Scale 21 (DASS-21). The level of caregiver burden was evaluated with Zarit Burden Interview (ZBI).

Results: A total of 119 caregivers participated in the study, and 35.2 % of them reported mild to moderate burden. The factors most strongly associated with higher caregiver burden were female caregivers, needs for assistance in activities of daily living (ADL), frequent seizures, polypharmacy, and affiliate stigma among caregivers. A statistically significant positive correlation was seen between caregiver burden and psychological impacts of depression (r 0.522, p < 0.001), anxiety (r 0.463, p < 0.001), and stress (r 0.598, p < 0.001).

Conclusion: This study demonstrated various degrees of caregiver burden among caregivers of adult PWE. A better understanding on the predictive factors and impacts on psychological health of caregivers are needed to provide suitable interventions including psychoeducation for the caregivers to alleviate their burden and subsequently improve the quality of caregiving.

背景:关于成年癫痫患者(PWE)的照顾者负担的数据仍然不足,特别是在马来西亚。本研究旨在探讨照顾残疾人的非正式照顾者的照顾者负担水平、照顾者负担的预测因素,以及照顾者负担对其心理健康的影响。方法:在本横断面研究中,在Canselor Tuanku Muhriz医院(HCTM)神经内科门诊就诊的成人PWE护理人员完成了一份包括参与者和护理接受者(成人PWE)人口统计数据的综合问卷。从访谈和医疗记录中获得癫痫相关数据。使用附属病耻感量表(ASS)评估照顾者的附属病耻感,并使用抑郁焦虑压力量表21 (DASS-21)评估心理影响。采用Zarit burden Interview (ZBI)评估照顾者负担水平。结果:共有119名护理人员参与了本研究,其中35.2%的人报告了轻中度负担。与较高的照顾者负担最密切相关的因素是女性照顾者、日常生活活动(ADL)的帮助需求、频繁癫痫发作、多种药物以及照顾者之间的关联耻辱。照顾者负担与抑郁心理影响呈显著正相关(r = 0.522, p)。结论:成人PWE照顾者存在不同程度的照顾者负担。需要更好地了解照顾者心理健康的预测因素及其影响因素,为照顾者提供适当的干预措施,包括心理教育,以减轻照顾者的负担,从而提高照顾质量。
{"title":"Prevalence and associated factors of caregiving burden among caregivers of adults with epilepsy in Malaysia - A cross-sectional study.","authors":"Ismayanti Mohd Ismail, Ching Soong Khoo, Layan Ibrahim, Marjorie Jia Yi Ong, Hui Jan Tan, Rozita Hod, Azlin Baharudin, Muhammad Samir Haziq Abd Rahman","doi":"10.1016/j.yebeh.2024.110244","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110244","url":null,"abstract":"<p><strong>Background: </strong>There are still insufficient data on caregiver burden among caregivers of adult people with epilepsy (PWE), particularly in Malaysia. This study aims to explore the level of perceived caregiver burden among the informal caregivers caring for PWE, its predicting factors associated with caregiver burden, and the impact of this caregiver burden on their psychological health.</p><p><strong>Methods: </strong>In this cross-sectional study, caregivers of adult PWE attending the neurology outpatient clinic at Hospital Canselor Tuanku Muhriz (HCTM) completed a comprehensive questionnaire comprising demographic data of participants and care recipients (adult PWE). Epilepsy-related data were obtained from the interview and medical records. Affiliate stigma among caregivers was assessed using Affiliate Stigma Scale (ASS), and psychological impacts were evaluated using Depression Anxiety Stress Scale 21 (DASS-21). The level of caregiver burden was evaluated with Zarit Burden Interview (ZBI).</p><p><strong>Results: </strong>A total of 119 caregivers participated in the study, and 35.2 % of them reported mild to moderate burden. The factors most strongly associated with higher caregiver burden were female caregivers, needs for assistance in activities of daily living (ADL), frequent seizures, polypharmacy, and affiliate stigma among caregivers. A statistically significant positive correlation was seen between caregiver burden and psychological impacts of depression (r 0.522, p < 0.001), anxiety (r 0.463, p < 0.001), and stress (r 0.598, p < 0.001).</p><p><strong>Conclusion: </strong>This study demonstrated various degrees of caregiver burden among caregivers of adult PWE. A better understanding on the predictive factors and impacts on psychological health of caregivers are needed to provide suitable interventions including psychoeducation for the caregivers to alleviate their burden and subsequently improve the quality of caregiving.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110244"},"PeriodicalIF":2.3,"publicationDate":"2024-12-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142909513","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
Differential alterations of structural network in temporal lobe epilepsy with different seizure types are associated with cognitive and psychiatric status. 不同发作类型颞叶癫痫的结构网络差异改变与认知和精神状态有关。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-26 DOI: 10.1016/j.yebeh.2024.110228
Xuemei Chen, Xiao Zhang, Bailing Qin, Dongying Huang, Cuimi Luo, Huachun Huang, Qin Zhou, Zirong Chen, Jinou Zheng

Background: The fundamental pathophysiologic understanding of different seizure types in Temporal lobe epilepsy (TLE) remains unclear. This study aimed to assess the distinct alterations of structural network in TLE patients with different seizure types and their relationships with cognitive and psychiatric symptoms.

Methods: Seventy-three patients with unilateral TLE, including 25 with uncontrolled focal to bilateral tonic-clonic seizures (FBTCS), 25 with controlled FBTCS and 23 with focal impaired awareness seizures (FIAS), as well as 26 healthy controls (HC), underwent the diffusion tensor imaging (DTI) scan. Network-based statistic (NBS) and graph theory analyses were employed to investigate the structural network and its topological properties. Partial correlation analyses were conducted to examine the relationships between clinical variables and disrupted network characteristics. Additionally, the support vector machine (SVM) algorithm was utilized for the classification of controlled and uncontrolled FBTCS.

Results: Compared to HC, TLE seizure type subgroups presented differently aberrant SC within the frontostriatal network. Additionally, alterations in the rich club organization and global network metrics were observed only in FBTCS. Notably, a significant decrease in all nodal metrics of the right amygdala were observed within the uncontrolled FBTCS group compared to the other three groups. Additionally, the disrupted nodal properties were significantly correlated with the age of onset, duration of epilepsy and psychiatric symptoms in FBTCS. Furthermore, the classifier achieved notably high accuracy (98%) in distinguishing between controlled and uncontrolled FBTCS.

Conclusions: Our findings may contribute to elucidating the neuropathological mechanisms of different seizure types in TLE and their impacts on cognitive and psychiatric status. SVM algorithm combined with nodal properties holds promise for predicting the poor seizure control of FBTCS.

背景:颞叶癫痫(TLE)不同发作类型的基本病理生理学认识尚不清楚。本研究旨在评估不同癫痫类型的TLE患者结构网络的不同改变及其与认知和精神症状的关系。方法:对73例单侧TLE患者进行弥散张量成像(DTI)扫描,其中局灶性至双侧强直阵挛性发作(FBTCS) 25例、局灶性意识障碍发作(FIAS) 25例、局灶性意识障碍发作(FIAS) 23例及健康对照(HC) 26例。采用基于网络的统计和图论分析方法研究了结构网络及其拓扑性质。采用偏相关分析来检验临床变量与中断网络特征之间的关系。此外,利用支持向量机(SVM)算法对受控和非受控FBTCS进行分类。结果:与HC相比,TLE发作类型亚组在额纹状体网络中出现不同的SC异常。此外,富人俱乐部组织和全球网络指标的变化仅在FBTCS中观察到。值得注意的是,与其他三组相比,未受控制的FBTCS组观察到右侧杏仁核的所有节点指标显着下降。此外,在FBTCS中,破坏的节点特性与发病年龄、癫痫持续时间和精神症状显著相关。此外,分类器在区分受控和非受控FBTCS方面取得了显着的高准确率(98%)。结论:本研究有助于阐明TLE不同发作类型的神经病理机制及其对认知和精神状态的影响。结合节点特性的支持向量机算法有望预测FBTCS的不良发作控制。
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引用次数: 0
Association between behavioral problems and parental stress in children and adolescents with epilepsy. 儿童和青少年癫痫患者的行为问题与父母压力之间的关系。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-24 DOI: 10.1016/j.yebeh.2024.110229
Sai Sirisha, Sireesha Jala, Sudhindra Vooturi, Anuja Patil, Shanmukhi Somayajula, Sita Jayalakshmi

Objective: The current study evaluated the association between behavioral problems in children and adolescents with epilepsy and parental stress.

Methods: A prospective observational study of 314 consecutive parents of children and adolescents with epilepsy who attended the out-patient epilepsy clinic of a tertiary care hospital was done between June 2022 and September 2023. Self-reported Child Behaviour Check List (CBCL) was reported by parents; who also reported the parental stress scale (PSS). The data as per CBCL guidelines was evaluated in three groups of children and adolescents with epilepsy aged 1.5 to 5 years; 6 to 10 years and 11 to 18 years. The associations between score on CBCL with reported score on PSS was evaluated.

Results: Among the 314 children and adolescents with epilepsy, 37(11.8 %) were aged between 1.5 to 5 years; while 108(34.4 %) aged between six to 10 years, the remaining 169(53.8 %) aged between 11 to 18 years. In children below 5 years of age, internalizing factors like anxiety/depression, somatic symptoms were significantly higher. Importantly, the reported scores on PSS were lower in parents of adolescents than children with epilepsy. When evaluated for correlation of CBCL with PSS, internalizing characteristics like withdrawal were strongly associated with parental stress in children below the age of 5 years. On the contrary, in children aged above five years, and in adolescents externalizing characteristics showed strong correlations with parental stress. Child's higher school performance had a negative correlation with PSS(R-Square: -0.499; p < 0.001) and requirement for special school or child not attending school had positive correlation with PSS(R-square: 0.433;p < 0.001).

Conclusion: Behavioral problems in children and adolescents with epilepsy differ with age. Parental stress is associated with internalizing behavior in pre-school children whereas externalizing behavior dominated in children and adolescents. Poor performance of children at school and requirement for special school is associated with high parental stress.

目的:本研究评估儿童和青少年癫痫行为问题与父母压力的关系。方法:对2022年6月至2023年9月在某三级医院癫痫门诊就诊的314名癫痫儿童和青少年的连续父母进行前瞻性观察研究。家长自行报告儿童行为检查表(CBCL);他们还报告了父母压力量表(PSS)。根据CBCL指南对三组1.5至5岁癫痫儿童和青少年进行了数据评估;6到10年,11到18年。评估CBCL评分与PSS报告评分之间的相关性。结果:314例癫痫儿童和青少年中,37例(11.8%)年龄在1.5 ~ 5岁;6 ~ 10岁的有108人(34.4%),11 ~ 18岁的有169人(53.8%)。在5岁以下的儿童中,焦虑/抑郁、躯体症状等内化因素明显更高。重要的是,青少年父母的PSS评分比癫痫儿童低。当评估CBCL与PSS的相关性时,5岁以下儿童的退缩等内化特征与父母压力密切相关。相反,在5岁以上的儿童和青少年中,外化特征与父母压力有很强的相关性。儿童的高中成绩与PSS呈负相关(r方:-0.499;结论:儿童和青少年癫痫患者的行为问题随年龄不同而不同。父母压力与学龄前儿童的内化行为有关,而外化行为在儿童和青少年中占主导地位。孩子在学校的表现不佳和特殊学校的要求与父母的高压力有关。
{"title":"Association between behavioral problems and parental stress in children and adolescents with epilepsy.","authors":"Sai Sirisha, Sireesha Jala, Sudhindra Vooturi, Anuja Patil, Shanmukhi Somayajula, Sita Jayalakshmi","doi":"10.1016/j.yebeh.2024.110229","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110229","url":null,"abstract":"<p><strong>Objective: </strong>The current study evaluated the association between behavioral problems in children and adolescents with epilepsy and parental stress.</p><p><strong>Methods: </strong>A prospective observational study of 314 consecutive parents of children and adolescents with epilepsy who attended the out-patient epilepsy clinic of a tertiary care hospital was done between June 2022 and September 2023. Self-reported Child Behaviour Check List (CBCL) was reported by parents; who also reported the parental stress scale (PSS). The data as per CBCL guidelines was evaluated in three groups of children and adolescents with epilepsy aged 1.5 to 5 years; 6 to 10 years and 11 to 18 years. The associations between score on CBCL with reported score on PSS was evaluated.</p><p><strong>Results: </strong>Among the 314 children and adolescents with epilepsy, 37(11.8 %) were aged between 1.5 to 5 years; while 108(34.4 %) aged between six to 10 years, the remaining 169(53.8 %) aged between 11 to 18 years. In children below 5 years of age, internalizing factors like anxiety/depression, somatic symptoms were significantly higher. Importantly, the reported scores on PSS were lower in parents of adolescents than children with epilepsy. When evaluated for correlation of CBCL with PSS, internalizing characteristics like withdrawal were strongly associated with parental stress in children below the age of 5 years. On the contrary, in children aged above five years, and in adolescents externalizing characteristics showed strong correlations with parental stress. Child's higher school performance had a negative correlation with PSS(R-Square: -0.499; p < 0.001) and requirement for special school or child not attending school had positive correlation with PSS(R-square: 0.433;p < 0.001).</p><p><strong>Conclusion: </strong>Behavioral problems in children and adolescents with epilepsy differ with age. Parental stress is associated with internalizing behavior in pre-school children whereas externalizing behavior dominated in children and adolescents. Poor performance of children at school and requirement for special school is associated with high parental stress.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110229"},"PeriodicalIF":2.3,"publicationDate":"2024-12-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142893147","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
Impact of genetic testing in developmental and epileptic encephalopathy- parents' perspective. 基因检测对发育性和癫痫性脑病的影响——父母的观点。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-21 DOI: 10.1016/j.yebeh.2024.110174
Ida Stenshorne, Marte Roa Syvertsen, Anette Ramm-Pettersen, Kaja K Selmer, Jeanette Koht, Mari Wold Henriksen
<p><strong>Background: </strong>Developmental and epileptic encephalopathies (DEEs) are a group of severe and heterogeneous epilepsies. Most of the affected patients have treatment refractory seizures, intellectual disability (ID), and multiple comorbidities. The condition has a negative impact on quality of life, both for the patients and their families. In recent decades, genetic testing has become an important part of the diagnostic routine investigation of patients with DEE. However, there are few quantitative studies on parental experiences and their perspectives on the genetic testing of their children. The aim of the present study was to describe parental experiences and perspectives concerning genetic testing, to investigate the importance of receiving an etiologic diagnosis, and consider the emotional impact of test results on parents.</p><p><strong>Methods: </strong>Based on a systematic literature search, a semi-quantitative questionnaire was designed to investigate the experiences of caregivers of patients with DEE, focusing on the period of genetic investigation. Eligible participants were caregivers of patients with epilepsy and intellectual disability or psychomotor delay (DEE) who had been through genetic investigation. Participants were consecutively recruited at Drammen Hospital (Norway) and through online recruitment in 2022-2023. The study was explorative and descriptive, and statistical analyses were performed with STATA.</p><p><strong>Results: </strong>Among the 60 responding caregivers, 59 were biological parents (32-75 years old) of children with DEE (1-43 years old) and were included in the statistical analyses. Among them, 67 % had a child with a genetic diagnosis. Knowing the etiology of the child's DEE was important for 91 %. Prior to genetic diagnostics, 62 % thought that knowing the cause of disease would make it easier to handle the epilepsy and other medical challenges. A large proportion (71 %) reported having had concerns about the cause of their child's disease before a potential genetic diagnosis was established, and, among these, 67 % suspected that something had happened during pregnancy or birth. The result of the genetic test led to a significantly higher degree of self-reported relief, grief, sadness, loneliness, and despair for the parents of a child that received a specific genetic diagnosis, compared to those who did not receive a diagnosis. While 24 % of parents had felt guilt concerning their child's epileptic condition (at any time), only 8,6% reported feeling guilt when receiving the result of the genetic test.</p><p><strong>Conclusions: </strong>This study provides insight into the parental experiences of genetic testing in children with DEE. It is important for the parents of a child with DEE to know the cause of disease. Parents of children with DEE who received a genetic diagnosis experienced relief, but also negative feelings associated with receiving the result of the genetic test. Support and
背景:发育性和癫痫性脑病是一组严重的异质性癫痫。大多数受影响的患者有难治性癫痫发作、智力残疾(ID)和多种合并症。这种情况对患者及其家人的生活质量都有负面影响。近几十年来,基因检测已成为DEE患者诊断常规调查的重要组成部分。然而,关于父母经历及其对子女基因检测的看法的定量研究很少。本研究的目的是描述父母对基因检测的经验和观点,探讨接受病因诊断的重要性,并考虑检测结果对父母的情感影响。方法:在系统文献检索的基础上,设计半定量问卷,以基因调查期为重点,对DEE患者护理人员的经历进行调查。符合条件的参与者是通过基因调查的癫痫和智力残疾或精神运动迟缓(DEE)患者的护理人员。参与者于2022-2023年在Drammen医院(挪威)和通过在线招聘连续招募。本研究为探索性、描述性研究,采用STATA进行统计分析。结果:60名照护者中有59名为DEE患儿(1 ~ 43岁)的亲生父母(32 ~ 75岁),并纳入统计分析。其中,67%的人的孩子有基因诊断。了解儿童DEE的病因对91%的人来说很重要。在基因诊断之前,62%的人认为了解疾病的原因会使他们更容易应对癫痫和其他医疗挑战。很大一部分人(71%)报告说,在确定潜在的遗传诊断之前,他们对孩子的疾病原因感到担忧,其中67%的人怀疑在怀孕或分娩期间发生了某些事情。与没有接受诊断的孩子相比,基因测试的结果导致接受特定基因诊断的孩子的父母自我报告的缓解、悲伤、悲伤、孤独和绝望的程度明显更高。虽然24%的父母(在任何时候)对孩子的癫痫状况感到内疚,但只有8.6%的父母在收到基因检测结果时感到内疚。结论:本研究提供了对DEE儿童基因检测的父母经验的见解。对于患有DEE的孩子的父母来说,了解疾病的原因是很重要的。接受基因诊断的DEE患儿的父母感到宽慰,但也会因接受基因检测结果而产生负面情绪。因此,应优先考虑结论性诊断检测后的支持和后续行动。
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引用次数: 0
The impact of an epilepsy peer education program on knowledge, attitudes, and first aid approaches: A quasi-experimental design. 癫痫同伴教育项目对知识、态度和急救方法的影响:一个准实验设计。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-20 DOI: 10.1016/j.yebeh.2024.110224
Yasemin Şahin Yıldız, Büşra Kurtuluş

Objective: This study aimed to evaluate the effect of a peer education program on students' epilepsy knowledge, attitudes, and seizure first aid approaches.

Methods: This study utilized a one-group pretest/posttest quasi-experimental design. Peer educators provided training to 1343 peer students. The program consisted of two face-to-face sessions, each lasting 60 min. Data were collected using a demographic questionnaire, first aid management information form, The Epilepsy Knowledge Level Scale, and The Epilepsy Attitude Scale. Descriptive statistics, paired samples t-test, and Pearson correlation analysis were used to analyze the data. The significance level was set at p < 0.05.

Results: The Epilepsy Knowledge Scale score increased from 8.17(±3.46) to 12.50(±2.41), and The Epilepsy Attitude Scale score increased from 59.39(±7.32) to 61.01(±6.95) after the training. There was a significant positive correlation between students' knowledge and attitudes both before training (r = 0.305, p < 0.05) and after training (r = 0.344, p < 0.05). After the training, the percentage of students who felt competent for seizure first aid intervention increased from 20.5 % to 54.4 % (p < 0.001). After the training, the results regarding recognizing seizure symptoms and what to do during a seizure were statistically significant (p < 0.05).

Significance: Our results show that peer-mediated learning is highly acceptable and that the training improves students' knowledge, positive attitudes, and seizure first aid approaches. Given these results, it is suggested that school-based epilepsy peer education programs be developed and implemented for students who will become future health professionals.

目的:探讨同伴教育对学生癫痫知识、态度和急救方法的影响。方法:采用单组前测/后测准实验设计。同伴教育者为1343名同伴学生提供了培训。该项目包括两次面对面交流,每次持续60分钟。数据收集采用人口调查问卷、急救管理信息表、癫痫知识水平量表和癫痫态度量表。采用描述性统计、配对样本t检验和Pearson相关分析对数据进行分析。结果:训练后癫痫知识量表得分由8.17(±3.46)分上升至12.50(±2.41)分,癫痫态度量表得分由59.39(±7.32)分上升至61.01(±6.95)分。培训前学生的知识与态度之间存在显著的正相关(r = 0.305, p)。我们的研究结果表明,同伴中介学习是高度可接受的,培训提高了学生的知识、积极态度和癫痫急救方法。鉴于这些结果,建议为将来成为卫生专业人员的学生制定和实施以学校为基础的癫痫同伴教育计划。
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引用次数: 0
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Epilepsy & Behavior
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