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A roadmap to closing the evidence-to-practice gap in status epilepticus 缩小癫痫状态证据与实践差距的路线图
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-23 DOI: 10.1016/j.yebeh.2024.110033
Hiba A. Haider
Status epilepticus (SE) is a time-sensitive, potentially life-threatening neuro-emergency associated with poor functional outcomes and increased hospital resource utilization especially when it progresses to refractory or super-refractory forms. Timely recognition & treatment improves outcomes, however gaps between recommended and implemented care are common and pervasive.
This review provides a roadmap for incorporating the relatively new field of Implementation Science in promoting the systematic uptake of evidence-based practices into the real-world care of patients with SE. A multifaceted approach − including better integration of real-world implementation and research infrastructure, an emphasis on standardizing and harmonization clinical data, re-examining funding priorities, regulatory reform, and the formation of transdisciplinary teams and learning collaboratives − has the potential to advance the care of patients in SE from its current status quo.
This topic was presented at the 9th London-Innsbruck Colloquium on Status Epilepticus and Acute Seizures held in April 2024.
癫痫状态(SE)是一种具有时间敏感性、可能危及生命的神经急症,与不良的功能预后和更多的医院资源使用相关,尤其是当癫痫发展为难治性或超难治性癫痫时。本综述为将相对较新的 "实施科学"(Implementation Science)领域纳入促进将循证实践系统地应用到 SE 患者的实际护理中提供了路线图。多方面的方法--包括更好地整合现实世界中的实施和研究基础设施、强调临床数据的标准化和统一性、重新审查资金的优先次序、监管改革以及组建跨学科团队和学习合作--都有可能从目前的现状出发,推动对 SE 患者的护理。
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引用次数: 0
Factors influencing efficacy and relapse of adrenocorticotropic hormone in infantile epileptic spasms syndrome 影响婴儿癫痫痉挛综合征肾上腺皮质激素疗效和复发的因素。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-22 DOI: 10.1016/j.yebeh.2024.110055
Dandan Mao, Sixiu Li, Yang Xu, Hui Chen, Ping Liu, Wenguang Hu

Background

Infantile epileptic spasms syndrome (IESS) is a severe epileptic condition characterized by persistent uncontrolled seizures, with some children experiencing recurrent seizures despite multiple pharmacological therapies. The prognostic risk factors associated with IESS remain unclear. This study aimed to evaluate the factors influencing the efficacy and relapse of adrenocorticotropic hormone (ACTH) treatment for IESS in infants, as well as to assess the correlation between the Burden of Amplitudes and Epileptiform Discharges (BASED) score and clinical outcomes.

Methods

A retrospective analysis was conducted on a cohort of 88 pediatric patients diagnosed with IESS who received ACTH therapy at our hospital from February 2016 to August 2023. Patients were categorized into response (n = 47) and non-response (n = 41) groups based on their treatment response at day 28. Responders were further classified into relapse and non-relapse groups. A modified Poisson regression model and receiver operating characteristic (ROC) curves were employed to evaluate the positive predictive values.

Results

In this study, a total of 47 patients (53.4 %) responded to ACTH treatment. Patients in the response group demonstrated significantly greater reductions in BASED scores by day 14 of ACTH treatment, yielding an area under the curve (AUC) of 0.859 (95 % CI: 0.782–0.937, P<0.05), with a sensitivity of 68.1 % and a specificity of 95.1 %. The optimal cut-off point was established at ≥ 2, corresponding to a Youden index of 0.632. Notably, patients who were on anti-seizure medications (ASMs) before ACTH treatment and those with developmental delay prior to the onset of spasms exhibited lower short-term response rates (P<0.05), although these factors did not demonstrate predictive value. Among the responders, 20 cases (42.6 %) experienced a relapse, with only those patients showing specific abnormalities on cranial magnetic resonance imaging (MRI) exhibiting a statistically higher proportion of relapse.

Conclusion

Patients receiving ASMs before ACTH treatment and those with developmental delays prior to the onset of spasms may have a less favorable therapeutic response. A reduction in BASED scores of 2 or greater by day 14 of ACTH treatment may signify a potentially positive treatment response. Additionally, patients with IESS who present with specific abnormalities on cranial MRI may have an increased likelihood of relapse following ACTH treatment.
背景:婴儿癫痫性痉挛综合征(IESS)是一种严重的癫痫疾病,其特点是癫痫发作持续不受控制,有些患儿在接受多种药物治疗后仍会反复发作。与IESS相关的预后风险因素仍不清楚。本研究旨在评估婴儿促肾上腺皮质激素(ACTH)治疗 IESS 的疗效和复发的影响因素,以及评估癫痫样放电和振幅负担(BASED)评分与临床结果之间的相关性:我们对2016年2月至2023年8月期间在本院接受ACTH治疗的88名确诊为IESS的儿科患者进行了回顾性分析。根据第28天的治疗反应,将患者分为有反应组(n = 47)和无反应组(n = 41)。有反应者又分为复发组和非复发组。采用改良泊松回归模型和接收器操作特征曲线来评估阳性预测值:在这项研究中,共有 47 名患者(53.4%)对促肾上腺皮质激素治疗产生了反应。在 ACTH 治疗的第 14 天,应答组患者的 BASED 评分明显降低,曲线下面积(AUC)为 0.859(95 % CI:0.782-0.937,P<0.05),灵敏度为 68.1%,特异性为 95.1%。最佳临界点确定为≥2,即尤登指数为 0.632。值得注意的是,在接受促肾上腺皮质激素治疗前服用抗癫痫药物(ASMs)的患者和在痉挛发生前发育迟缓的患者的短期反应率较低(P<0.05),尽管这些因素并未显示出预测价值。在有反应的患者中,有20例(42.6%)复发,只有那些在头颅磁共振成像(MRI)上显示出特殊异常的患者的复发比例在统计学上更高:结论:在接受促肾上腺皮质激素治疗前接受ASMs治疗的患者,以及在痉挛发生前有发育迟缓的患者,其治疗反应可能较差。如果在接受 ACTH 治疗的第 14 天,BASED 评分降低 2 分或更多,则可能意味着治疗反应良好。此外,头颅核磁共振成像(MRI)出现特殊异常的 IESS 患者在接受 ACTH 治疗后复发的可能性可能会增加。
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引用次数: 0
Ketogenic diet effectiveness is superior for drug resistant epilepsy with causative genetic mutation than those without genetic etiology 生酮饮食对有致病基因突变的耐药性癫痫的疗效优于无致病基因突变者。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-22 DOI: 10.1016/j.yebeh.2024.110052
Tzu-Yun Hsieh , Ting-Yu Su , Kai-Yin Hung , Mei-Shin Hsu , Ying-Jui Lin , Hsuan-Chang Kuo , Pi-Lien Hung

Aim

Epilepsy with genetic etiology is high prevalence of DRE, which is reported responsive to ketogenic diet therapy (KDT). Our retrospective cohort study attempted to investigate the KD responsiveness between DRE with genetic and non-genetic etiology.

Method

Non-fasting gradual KD initiation protocol (GRAD-KD) and five-day diet program was implemented. Participants were categorized into genetic epilepsy or non-genetic epilepsy groups based on genetic tests. Monthly seizure frequencies and seizure reduction rate after KDT 3 months and 6 months were compared between two groups.

Results

Forty-six patients with genetic epilepsy and ninety-four patients with non-genetic epilepsy were recruited. Among 46 patients with genetic epilepsy, 12 patients withdrew from diet before 3 months of KDT, and 7 patients withdrew from diet before 6 months of KDT, thus, 27 patients retained the diet. Among 94 patients with non-genetic epilepsy, 20 patients withdrew from diet before 3 months of KDT, and 21 patients withdrew from diet before 6 months of KDT, 53 patients retained the diet. For the 46 patients with genetic epilepsy, 12 patients had pathogenic variants related to developmental and epileptic encephalopathy (DEE), whereas other 34 patients had disease-causing variants other than DEE. The mean monthly seizure frequencies showed significantly decreased both in patient with genetic-and non-genetic epilepsy after 6 months of KDT, however, the seizure reduction rate was significantly higher in patients with genetic epilepsy than patients with non-genetic epilepsy after 6 months of KDT. In addition, our data demonstrated that KDT could significantly reduce seizure burden in patients with non-DEE than patients with DEE. In addition, the patients with non-DEE significantly achieved greater seizure reduction rate than patients with DEE after 6 months of KDT.

Interpretation:

Our data highlighted that KD effectiveness is more outstanding in decreasing seizure burdens for epileptic patients with genetic etiology than those without causative gene mutation. Additionally, KDT is also significantly effective for decreasing more seizure burdens for non-DEE patients than for DEE patients. We suggested epileptic patients caused by genetic mutation should implement KDT as early as possible.
目的:遗传性癫痫是 DRE 的高发病症,据报道对生酮饮食疗法(KDT)有反应。我们的回顾性队列研究试图调查遗传性和非遗传性病因的 DRE 对生酮饮食疗法的反应性:方法:采用非空腹渐进生酮饮食启动方案(GRAD-KD)和五天饮食计划。根据基因检测结果将参与者分为遗传性癫痫组和非遗传性癫痫组。比较两组患者在KDT 3个月和6个月后的每月发作频率和发作减少率:结果:招募了 46 名遗传性癫痫患者和 94 名非遗传性癫痫患者。在 46 名遗传性癫痫患者中,12 名患者在 KDT 3 个月前退出饮食,7 名患者在 KDT 6 个月前退出饮食,因此 27 名患者保留了饮食。在 94 名非遺傳性癲癇患者中,20 名患者在接受 "關鍵性治療 "3 個月前退出飲食,21 名患者在接受 "關鍵性治療 "6 個月前退出飲食,53 名患者保留飲食。在46名遗传性癫痫患者中,12名患者的致病变异与发育和癫痫性脑病(DEE)有关,而其他34名患者的致病变异与DEE无关。经过 6 个月的 KDT 治疗后,遗传性和非遗传性癫痫患者的每月平均癫痫发作频率均明显降低,但遗传性癫痫患者的癫痫发作减少率明显高于非遗传性癫痫患者。此外,我们的数据还表明,KDT 能明显减轻非遗传性癫痫患者的癫痫发作负担,而非遗传性癫痫患者的发作负担则明显低于遗传性癫痫患者。此外,在接受 6 个月的 KDT 后,非 DEE 患者的癫痫发作减少率明显高于 DEE 患者:我们的数据强调,与无致病基因突变的癫痫患者相比,有遗传病因的癫痫患者在减少癫痫发作方面的效果更为突出。此外,KDT 在减少非 DEE 患者癫痫发作方面的效果也明显优于 DEE 患者。我们建议由基因突变引起的癫痫患者应尽早实施 KDT。
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引用次数: 0
Exploring religious coping strategies epilepsy patients in Turkey: A descriptive study 探索土耳其癫痫患者的宗教应对策略:描述性研究
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110060
Serpil Özcan , Bahar Çiftçi

Objective

It is seen that religious coping methods are used in the literature, but the existing literature on religious coping methods and coping strategies used by epilepsy patients is insufficient. Therefore, this study aimed to determine the positive and negative religious coping levels of epilepsy patients.

Methods

This research is a descriptive research type. The research data were collected from patients with epilepsy living in a province in eastern Turkey between April and June 2024. The research population consists of epilepsy patients living in Erzurum province. The sample consisted of 154 patients who agreed to participate in the study. Data collection tools were “Questionnaire Form” and “Religious Coping Scale.” Frequency, percentage calculations, mean and standard deviation values were used to evaluate the data. One Way Anova, Independent Sample t-test, Mann-Whitney U, and Pearson correlation tests were also used.

Results

Positive religious coping scores (22.90 ± 5.35) and Negative religious coping scores (7.24 ± 3.25) of epilepsy patients were found to be at high levels. Participants’ gender, marital status, occupation, income status, prayer, fasting, and Quran reading habits significantly affected their positive religious coping behaviors (p < 0.05). In addition, it was determined that as the age of the participants increased, they resorted to positive religious coping behaviors more (r: 0.215, p < 0.05).

Conclusions

The results of the study show that the positive and negative religious coping levels of epilepsy patients are high. In addition, the participants prefer positive religious coping behaviors more.

目的 从文献中可以看到宗教应对方法的使用,但现有文献中关于癫痫患者使用的宗教应对方法和应对策略的研究不足。因此,本研究旨在确定癫痫患者的积极和消极宗教应对水平。研究数据收集自 2024 年 4 月至 6 月期间居住在土耳其东部某省的癫痫患者。研究对象包括居住在埃尔祖鲁姆省的癫痫患者。样本包括同意参与研究的 154 名患者。数据收集工具为 "问卷表 "和 "宗教应对量表"。数据评估采用频率、百分比计算、平均值和标准偏差值。结果发现,癫痫患者的宗教应对积极得分(22.90 ± 5.35)和宗教应对消极得分(7.24 ± 3.25)均处于较高水平。参与者的性别、婚姻状况、职业、收入状况、祈祷、斋戒和阅读古兰经的习惯对其积极宗教应对行为有显著影响(p <0.05)。研究结果表明,癫痫患者的积极和消极宗教应对水平都很高。此外,参与者更倾向于积极的宗教应对行为。
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引用次数: 0
Clinical characteristics of a first seizure evaluation clinic in an academic center 学术中心首次癫痫发作评估门诊的临床特点。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110054
Cody L. Nathan, Morgan Kinsinger, Asia Giammarco-Hock, Elizabeth Cunningham, Elizabeth Gerard, Stephan Schuele, Stephen VanHaerents

Introduction

Evaluation by an epileptologist can help distinguish epileptic seizures from seizure mimickers. Proper and timely diagnosis of a seizure or new onset epilepsy is of critical importance due to implications regarding treatment, prognosis, quality of life, morbidity, and mortality. The goal of our study is to describe the demographics and clinical characteristics of patients referred to a first seizure clinic at a tertiary academic center within Chicago, Illinois.

Methods

This is a retrospective cohort study of adult patients referred to our clinic. Patients were identified through the electronic medical record from March 2021 to March 2022. Charts were reviewed to assess pertinent clinical characteristics and patient demographic data.

Results

A total of 123 out of 138 (89.0 %) scheduled patients checked in to the visit between March 2021-March 2022, of which 87/123 (70.7 %) were diagnosed with a seizure. Other diagnoses included syncope (17/123, 13.8 %), undifferentiated event (16/123, 13.0 %), suspected psychogenic non-epileptic event (2/123, 1.6 %), and migraine (1, 0.8 %). Of those with a seizure, 73/87 (83.9 %) were unprovoked and 14/87 (16.1 %) were provoked. The average wait time to be seen as a new patient by an epileptologist was significantly shorter with the establishment of this clinic compared to the year prior (17 days versus 53 days, p value < 0.001). The majority of patients had an EEG prior to or after the visit (121/123, 98.4 %), of which 24/121 (19.8 %) had interictal epileptiform activity. Findings relevant to the patient’s cause of epilepsy were found in 26/108 (24.1 %) of patients who underwent an MRI or CT scan of the head. There were 40/123 (32.5 %) patients prescribed an anti-seizure medication (ASM) prior to the first office visit and 65/123 (52.8 %) patients prescribed an ASM within the first three office visits.

Conclusion

A first seizure evaluation clinic in an urban setting is an achievable and efficient way to evaluate patients with paroxysmal events concerning for seizure in a timely manner. Most patients in this clinic were diagnosed with epileptic seizures. Timely ancillary testing with head imaging and EEG can help contribute to the diagnosis of epilepsy and guide treatment.
导言:由癫痫专科医生进行评估有助于区分癫痫发作和癫痫发作模拟者。正确及时地诊断癫痫发作或新发癫痫至关重要,因为这对治疗、预后、生活质量、发病率和死亡率都有影响。我们的研究旨在描述伊利诺伊州芝加哥市一家三级学术中心首次癫痫发作门诊转诊患者的人口统计学和临床特征:这是一项针对转诊至本诊所的成年患者的回顾性队列研究。通过电子病历确定了 2021 年 3 月至 2022 年 3 月期间的患者。审查病历以评估相关临床特征和患者人口统计学数据:2021年3月至2022年3月期间,138名预约患者中共有123人(89.0%)办理了就诊手续,其中87/123人(70.7%)被诊断为癫痫发作。其他诊断包括晕厥(17/123,13.8 %)、未分化事件(16/123,13.0 %)、疑似精神性非癫痫事件(2/123,1.6 %)和偏头痛(1,0.8 %)。在癫痫发作患者中,73/87(83.9%)为无诱因发作,14/87(16.1%)为诱因发作。与前一年相比,设立该门诊后癫痫专科医生接诊新患者的平均等待时间明显缩短(17 天对 53 天,P 值 结论:该门诊的设立使癫痫专科医生的接诊时间明显缩短(17 天对 53 天,P 值 结论:该门诊的设立使癫痫专科医生的接诊时间明显缩短(17 天对 53 天,P 值 结论):在城市环境中开设首次癫痫发作评估门诊,是及时评估阵发性癫痫发作患者的可行且高效的方法。该诊所的大多数患者都被确诊为癫痫发作。及时进行头部成像和脑电图辅助检查有助于癫痫诊断和指导治疗。
{"title":"Clinical characteristics of a first seizure evaluation clinic in an academic center","authors":"Cody L. Nathan,&nbsp;Morgan Kinsinger,&nbsp;Asia Giammarco-Hock,&nbsp;Elizabeth Cunningham,&nbsp;Elizabeth Gerard,&nbsp;Stephan Schuele,&nbsp;Stephen VanHaerents","doi":"10.1016/j.yebeh.2024.110054","DOIUrl":"10.1016/j.yebeh.2024.110054","url":null,"abstract":"<div><h3>Introduction</h3><div>Evaluation by an epileptologist can help distinguish epileptic seizures from seizure mimickers. Proper and timely diagnosis of a seizure or new onset epilepsy is of critical importance due to implications regarding treatment, prognosis, quality of life, morbidity, and mortality. The goal of our study is to describe the demographics and clinical characteristics of patients referred to a first seizure clinic at a tertiary academic center within Chicago, Illinois.</div></div><div><h3>Methods</h3><div>This is a retrospective cohort study of adult patients referred to our clinic. Patients were identified through the electronic medical record from March 2021 to March 2022. Charts were reviewed to assess pertinent clinical characteristics and patient demographic data.</div></div><div><h3>Results</h3><div>A total of 123 out of 138 (89.0 %) scheduled patients checked in to the visit between March 2021-March 2022, of which 87/123 (70.7 %) were diagnosed with a seizure. Other diagnoses included syncope (17/123, 13.8 %), undifferentiated event (16/123, 13.0 %), suspected psychogenic non-epileptic event (2/123, 1.6 %), and migraine (1, 0.8 %). Of those with a seizure, 73/87 (83.9 %) were unprovoked and 14/87 (16.1 %) were provoked. The average wait time to be seen as a new patient by an epileptologist was significantly shorter with the establishment of this clinic compared to the year prior (17 days versus 53 days, p value &lt; 0.001). The majority of patients had an EEG prior to or after the visit (121/123, 98.4 %), of which 24/121 (19.8 %) had interictal epileptiform activity. Findings relevant to the patient’s cause of epilepsy were found in 26/108 (24.1 %) of patients who underwent an MRI or CT scan of the head. There were 40/123 (32.5 %) patients prescribed an anti-seizure medication (ASM) prior to the first office visit and 65/123 (52.8 %) patients prescribed an ASM within the first three office visits.</div></div><div><h3>Conclusion</h3><div>A first seizure evaluation clinic in an urban setting is an achievable and efficient way to evaluate patients with paroxysmal events concerning for seizure in a timely manner. Most patients in this clinic were diagnosed with epileptic seizures. Timely ancillary testing with head imaging and EEG can help contribute to the diagnosis of epilepsy and guide treatment.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282322","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
Risk factors for secondary epilepsy following febrile seizures in children: A meta-analysis 儿童发热性癫痫发作后继发癫痫的风险因素:荟萃分析
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110051
Jing Zhang , Qiaomei Jing , Shangbin Li , Ye Liu , Zhe Lin , Xinyu Han , Ge Xu , Sihua Dai , Jing Zhang , Changjun Ren

Objective

To systematically assess the risk factors for secondary epilepsy in children with febrile seizures, in order to promptly identify early signs of epilepsy and establish a reliable foundation for timely clinical intervention and improved prognosis.

Methods

The databases, including CNKI, WanFang, VIP, CBM, PubMed, Embase, Web of Science, and the Cochrane Library were searched for relevant studies, up to October 2023. Two researchers independently collected and extracted data from selected studies, adhering to predefined criteria. Statistical analysis was performed using Stata 15.0.

Results

A total of 23 studies included 714 cases in the case group and 5269 cases in the control group. The results of Meta-analysis showed that preterm birth (OR=3.30, P=0.02), history of perinatal asphyxia (OR=3.94, P=0.001), age at the first seizure < 12 months (OR=2.93, P=0.003), peak temperature < 39℃ (OR=2.51, P<0.001), onset of fever to seizure < 1 h (OR=5.61, P<0.001), Complex FS(OR=4.08, P<0.001), duration of the seizure > 15 min (OR=6.21, P<0.001), Multiple seizures (≥2/episode) in one attack (OR=2.92, P<0.001), focal seizures (OR=2.53, P=0.018), recurrent FS (≥2) (OR=3.49, P<0.001), neurodevelopmental abnormality(OR=8.68, P<0.001), developmental delay(OR=10.04, P<0.001), family history of epilepsy (OR=2.74, P=0.004), family history of FS (OR=2.07, P=0.022), electroencephalogram (EEG) abnormal(OR=4.06, P<0.001)and Brain imaging abnormalities (OR=2.84, P=0.002)were Risk factors for secondary epilepsy following FS in Children. Notably, gender (female) was not a significant factor.

Conclusions

This study provides a comprehensive and systematic discussion of the risk factors associated with secondary epilepsy in children with febrile seizures. It actively formulates intervention measures for modifiable risk factors and conducts early detection and continuous follow-up observation for non-modifiable high-risk children, thereby reducing the risk of epilepsy.

目的系统评估发热性癫痫发作患儿继发性癫痫的危险因素,以便及时发现癫痫的早期征兆,为及时临床干预和改善预后奠定可靠的基础。方法检索 CNKI、万方、VIP、CBM、PubMed、Embase、Web of Science 和 Cochrane Library 等数据库中截至 2023 年 10 月的相关研究。两名研究人员按照预先设定的标准独立收集和提取所选研究的数据。结果 共有 23 项研究,病例组中有 714 例,对照组中有 5269 例。Meta 分析结果显示,早产(OR=3.30,P=0.02)、围产期窒息史(OR=3.94,P=0.001)、首次发作年龄 < 12 个月(OR=2.93,P=0.003)、最高体温 < 39℃(OR=2.51,P<0.001)、发热开始至发作<1 h(OR=5.61,P<0.001)、复杂FS(OR=4.08,P<0.001)、发作持续时间>15 min(OR=6.21,P<0.001)、一次发作中多次发作(≥2次/次)(OR=2.92,P<0.001)、局灶性癫痫发作(OR=2.53,P=0.018)、反复发作的 FS(≥2 次)(OR=3.49,P<0.001)、神经发育异常(OR=8.68,P<0.001)、发育迟缓(OR=10.04,P<0.001)、癫痫家族史(OR=2.74,P=0.004)、FS家族史(OR=2.07,P=0.022)、脑电图(EEG)异常(OR=4.06,P<0.001)和脑成像异常(OR=2.84,P=0.002)是儿童FS后继发性癫痫的危险因素。结论 本研究全面系统地探讨了热性惊厥儿童继发性癫痫的相关危险因素。积极针对可改变的风险因素制定干预措施,对不可改变的高危儿童进行早期发现和持续随访观察,从而降低癫痫风险。
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引用次数: 0
The concept of “control” in people with epilepsy: A qualitative study 癫痫患者的 "控制 "概念:定性研究
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110059
Itzel A. Camarillo , Sylwia Misiewicz , Karolynn Siegel , Ruth Ottman

Epilepsy fundamentally involves a struggle with “control,” commonly framed in terms of reducing the frequency and severity of seizures. This paper seeks to understand how people with epilepsy (PWE) think about and define control, as well as the psychosocial outcomes of self-managing epilepsy and low perceived control.

Here, we employ a qualitative analysis of interviews with 64 adults with epilepsy in treatment in a tertiary referral center in New York City, conducted between July 2020 and July 2022 as part of a larger study of the lived experiences of PWE. The interviews were coded, and thematic analysis was used to identify participants’ constructions of control and the breadth of illness intrusiveness they experienced.

Findings indicate that applying the illness intrusiveness concept to epilepsy aligns with existing research, revealing that PWE are impacted in numerous ways beyond seizure frequency and severity. Participants reported significant anxiety related to the unpredictability of seizures and the potential embarrassment of having seizures in public. These insights highlight that illness self-management and social challenges are critical components of the experience of having epilepsy.

Our findings underscore the need for a wholistic approach to improving quality of life for PWE that recognizes the broader context of illness intrusiveness. By understanding and enhancing perceived control, future interventions can better support the mental health and overall well-being of PWE.

从根本上说,癫痫涉及与 "控制 "的斗争,而 "控制 "通常是指减少癫痫发作的频率和严重程度。本文试图了解癫痫患者(PWE)如何看待和定义控制,以及自我管理癫痫和低感知控制的社会心理结果。在此,我们采用定性分析的方法,对纽约市一家三级转诊中心的 64 名接受治疗的成年癫痫患者进行了访谈,访谈于 2020 年 7 月至 2022 年 7 月期间进行,是一项关于癫痫患者生活经历的大型研究的一部分。研究结果表明,将疾病侵扰性的概念应用于癫痫与现有研究一致,揭示了癫痫发作频率和严重程度之外,公共卫生参与者还受到多方面的影响。参与者报告了与癫痫发作的不可预测性有关的严重焦虑,以及在公共场合癫痫发作可能带来的尴尬。我们的研究结果突出表明,有必要采取一种全面的方法来提高残疾人的生活质量,这种方法应认识到疾病侵扰的更广泛背景。通过了解和加强感知控制,未来的干预措施可以更好地支持癫痫患者的心理健康和整体福祉。
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引用次数: 0
Towards user-centered design of medical devices for SUDEP prediction and prevention: Insights from persons with epilepsy and caregivers 以用户为中心设计用于预测和预防 SUDEP 的医疗设备:来自癫痫患者和护理人员的见解。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110034
João Ferreira , Miguel França , Mariana Rei , Ricardo Peixoto , Sidsel Armand Larsen , Adriano Bernini , Lígia Lopes , Carlos Conde , João Claro

Objectives

As epilepsy management medical devices emerge as potential technological solutions for prediction and prevention of sudden death in epilepsy (SUDEP), there is a gap in understanding the features and priorities that should be included in the design of these devices. This study aims to bridge the gap between current technology and emerging needs by leveraging insights from persons with epilepsy (PWE) and caregivers (CG) on current epilepsy management devices and understanding how SUDEP awareness influences preferences and design considerations for potential future solutions.

Methods

Two cross-sectional surveys were designed to survey PWE and CG on medical device design features, SUDEP awareness, and participation in medical device research. Data analysis included both qualitative thematic analysis and quantitative statistical analysis.

Results

The survey revealed that among 284 responses, CG were more aware of SUDEP than PWE. Comfort was identified as the primary concern regarding wearable medical devices for epilepsy management with significant differences between PWE and CG regarding acceptance and continuous use preferences. The thematic analysis identified integration with daily life, aesthetic and emotional resonance, adaptability to seizure characteristics, and user-centric design specifications as crucial factors to be considered for enhanced medical device adoption. The integration of a companion app is seen as an important tool to enhance communication and data sharing.

Discussion

This study reveals that while SUDEP awareness can promote the development of future SUDEP predictive and preventive medical devices, these should be designed to mitigate its impact on daily life and anxiety of both PWE and CG. Comfort and acceptance are seen as key priorities to support continuous use and are seen as a technical requirement of future medical devices for SUDEP prediction and prevention. Widespread adoption requires these technologies to be customizable to adapt to different lifestyles and social situations. A holistic approach should be used in the design of future medical devices to capture several dimensions of PWE and CG epilepsy management journey and uphold communication between healthcare professionals, PWE and CG.

Conclusion

Data from this study highlight the importance of considering user preferences and experiences in the design of epilepsy management medical devices with potential applicability for SUDEP prediction and prevention. By employing user-centered design methods this research provides valuable insights to inform the development of future SUDEP prediction and prevention devices.
目标:随着癫痫管理医疗设备作为预测和预防癫痫猝死 (SUDEP) 的潜在技术解决方案出现,人们对这些设备设计中应包含的功能和优先事项的了解还存在差距。本研究旨在利用癫痫患者(PWE)和护理人员(CG)对当前癫痫管理设备的见解,了解对 SUDEP 的认识如何影响对潜在未来解决方案的偏好和设计考虑,从而弥合当前技术与新兴需求之间的差距:方法:设计了两项横断面调查,以调查 PWE 和 CG 对医疗设备设计特点、对 SUDEP 的认识以及对医疗设备研究的参与情况。数据分析包括定性专题分析和定量统计分析:调查显示,在 284 份回复中,CG 对 SUDEP 的认识高于 PWE。对于用于癫痫管理的可穿戴医疗设备,舒适度被认为是首要考虑因素,而在接受度和持续使用偏好方面,公共卫生人员和社区卫生人员之间存在显著差异。专题分析认为,与日常生活的结合、美学和情感共鸣、对癫痫发作特征的适应性以及以用户为中心的设计规范是提高医疗设备采用率的关键因素。整合配套应用程序被视为加强沟通和数据共享的重要工具:本研究表明,虽然对 SUDEP 的认识可以促进未来 SUDEP 预测和预防医疗设备的发展,但这些设备的设计应能减轻其对 PWE 和 CG 日常生活和焦虑的影响。舒适度和接受度被视为支持持续使用的关键优先事项,也被视为未来 SUDEP 预测和预防医疗设备的技术要求。要得到广泛应用,这些技术必须能够适应不同的生活方式和社会环境。在设计未来的医疗设备时,应采用整体方法来捕捉 PWE 和 CG 在癫痫管理过程中的多个维度,并坚持医护人员、PWE 和 CG 之间的沟通:本研究的数据强调了在设计可能适用于 SUDEP 预测和预防的癫痫管理医疗设备时考虑用户偏好和体验的重要性。通过采用以用户为中心的设计方法,本研究为未来 SUDEP 预测和预防设备的开发提供了有价值的见解。
{"title":"Towards user-centered design of medical devices for SUDEP prediction and prevention: Insights from persons with epilepsy and caregivers","authors":"João Ferreira ,&nbsp;Miguel França ,&nbsp;Mariana Rei ,&nbsp;Ricardo Peixoto ,&nbsp;Sidsel Armand Larsen ,&nbsp;Adriano Bernini ,&nbsp;Lígia Lopes ,&nbsp;Carlos Conde ,&nbsp;João Claro","doi":"10.1016/j.yebeh.2024.110034","DOIUrl":"10.1016/j.yebeh.2024.110034","url":null,"abstract":"<div><h3>Objectives</h3><div>As epilepsy management medical devices emerge as potential technological solutions for prediction and prevention of sudden death in epilepsy (SUDEP), there is a gap in understanding the features and priorities that should be included in the design of these devices. This study aims to bridge the gap between current technology and emerging needs by leveraging insights from persons with epilepsy (PWE) and caregivers (CG) on current epilepsy management devices and understanding how SUDEP awareness influences preferences and design considerations for potential future solutions.</div></div><div><h3>Methods</h3><div>Two cross-sectional surveys were designed to survey PWE and CG on medical device design features, SUDEP awareness, and participation in medical device research. Data analysis included both qualitative thematic analysis and quantitative statistical analysis.</div></div><div><h3>Results</h3><div>The survey revealed that among 284 responses, CG were more aware of SUDEP than PWE. Comfort was identified as the primary concern regarding wearable medical devices for epilepsy management with significant differences between PWE and CG regarding acceptance and continuous use preferences. The thematic analysis identified integration with daily life, aesthetic and emotional resonance, adaptability to seizure characteristics, and user-centric design specifications as crucial factors to be considered for enhanced medical device adoption. The integration of a companion app is seen as an important tool to enhance communication and data sharing.</div></div><div><h3>Discussion</h3><div>This study reveals that while SUDEP awareness can promote the development of future SUDEP predictive and preventive medical devices, these should be designed to mitigate its impact on daily life and anxiety of both PWE and CG. Comfort and acceptance are seen as key priorities to support continuous use and are seen as a technical requirement of future medical devices for SUDEP prediction and prevention. Widespread adoption requires these technologies to be customizable to adapt to different lifestyles and social situations. A holistic approach should be used in the design of future medical devices to capture several dimensions of PWE and CG epilepsy management journey and uphold communication between healthcare professionals, PWE and CG.</div></div><div><h3>Conclusion</h3><div>Data from this study highlight the importance of considering user preferences and experiences in the design of epilepsy management medical devices with potential applicability for SUDEP prediction and prevention. By employing user-centered design methods this research provides valuable insights to inform the development of future SUDEP prediction and prevention devices.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282327","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
Nursing education strategy for caregivers of children and adolescents with epilepsy 针对癫痫儿童和青少年护理人员的护理教育策略。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110035
Sandra Milena Campiño-Valderrama , Paula Andrea Duque , Yeison Alberto Garcés-Gómez
Epilepsy is a disease that commonly manifests in childhood and can significantly affect the quality of life for both sufferers and their families. As such, it necessitates comprehensive and high-quality healthcare.

Objective

To assess the impact of an educational intervention targeted to caregivers of children and adolescents with epilepsy.

Materials and Methods

A cross-sectional study conducted between February and November 2022, involving 140 patients and their primary caregivers who intentionally sought medical consultation at a pediatric hospital in Caldas, Colombia. Initial nursing consultations were conducted to identify clinical and demographic characteristics and to assess knowledge about the disease, its management, and care. Subsequently, a comprehensive educational process was implemented using various educational aids. After 60 days, feedback was provided to evaluate the caregivers’ learning.

Results

Focal epilepsy, generalized epilepsy and idiopathic focal epilepsy predominated in the medical diagnoses. The etiology highlighted genetic cause and structural 70% of caregivers were female. Caregivers’ schooling: 10% of caregivers did not have schooling, 28% had primary education, 46% had secondary education, 16% had postgraduate education. Caregivers demonstrated knowledge about epilepsy and its management, with the majority scoring above 50%. The posttest indicated improvement in learning processes, and caregivers expressed that it benefited them in learning first aid.

Conclusion

Establishing educational programs tailored to the needs of individuals and promoting care plans are essential for improving the living conditions of patients with epilepsy and their caregivers.
癫痫是一种常见于儿童期的疾病,会严重影响患者及其家人的生活质量。因此,有必要提供全面和高质量的医疗保健服务:评估针对癫痫儿童和青少年护理人员的教育干预措施的影响:这项横断面研究于 2022 年 2 月至 11 月间进行,涉及哥伦比亚卡尔达斯一家儿科医院有意就诊的 140 名患者及其主要护理人员。初步护理咨询旨在确定临床和人口特征,并评估有关疾病、管理和护理的知识。随后,利用各种教育辅助工具实施了全面的教育过程。60 天后,对护理人员的学习情况进行反馈评估:结果:在医学诊断中,局灶性癫痫、全身性癫痫和特发性局灶性癫痫占多数。病因突出表现为遗传原因,70%的护理人员为女性。护理人员的学历:10%的护理人员未受过教育,28%受过初等教育,46%受过中等教育,16%受过研究生教育。护理人员对癫痫及其治疗有一定的了解,大多数人的得分在 50%以上。事后测试表明,护理人员在学习过程中取得了进步,并表示在学习急救知识方面受益匪浅:结论:制定适合个人需求的教育计划和推广护理计划对于改善癫痫患者及其护理人员的生活条件至关重要。
{"title":"Nursing education strategy for caregivers of children and adolescents with epilepsy","authors":"Sandra Milena Campiño-Valderrama ,&nbsp;Paula Andrea Duque ,&nbsp;Yeison Alberto Garcés-Gómez","doi":"10.1016/j.yebeh.2024.110035","DOIUrl":"10.1016/j.yebeh.2024.110035","url":null,"abstract":"<div><div>Epilepsy is a disease that commonly manifests in childhood and can significantly affect the quality of life for both sufferers and their families. As such, it necessitates comprehensive and high-quality healthcare.</div></div><div><h3>Objective</h3><div>To assess the impact of an educational intervention targeted to caregivers of children and adolescents with epilepsy.</div></div><div><h3>Materials and Methods</h3><div>A cross-sectional study conducted between February and November 2022, involving 140 patients and their primary caregivers who intentionally sought medical consultation at a pediatric hospital in Caldas, Colombia. Initial nursing consultations were conducted to identify clinical and demographic characteristics and to assess knowledge about the disease, its management, and care. Subsequently, a comprehensive educational process was implemented using various educational aids. After 60 days, feedback was provided to evaluate the caregivers’ learning.</div></div><div><h3>Results</h3><div>Focal epilepsy, generalized epilepsy and idiopathic focal epilepsy predominated in the medical diagnoses. The etiology highlighted genetic cause and structural 70% of caregivers were female. Caregivers’ schooling: 10% of caregivers did not have schooling, 28% had primary education, 46% had secondary education, 16% had postgraduate education. Caregivers demonstrated knowledge about epilepsy and its management, with the majority scoring above 50%. The posttest indicated improvement in learning processes, and caregivers expressed that it benefited them in learning first aid.</div></div><div><h3>Conclusion</h3><div>Establishing educational programs tailored to the needs of individuals and promoting care plans are essential for improving the living conditions of patients with epilepsy and their caregivers.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282324","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
Progression to refractory status epilepticus: A machine learning analysis by means of classification and regression tree analysis 难治性癫痫进展:通过分类和回归树分析进行机器学习分析。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110005
Stefano Meletti , Giada Giovannini , Simona Lattanzi , Arian Zaboli , Niccolò Orlandi , Gianni Turcato , Francesco Brigo

Background and Objectives

to identify predictors of progression to refractory status epilepticus (RSE) using a machine learning technique.

Methods

Consecutive patients aged ≥ 14 years with SE registered in a 9-years period at Modena Academic Hospital were included in the analysis. We evaluated the risk of progression to RSE using logistic regression and a machine learning analysis by means of classification and regression tree analysis (CART) to develop a predictive model of progression to RSE.

Results

705 patients with SE were included in the study; of those, 33 % (233/705) evolved to RSE. The progression to RSE was an independent risk factor for 30-day mortality, with an OR adjusted for previously identified possible univariate confounders of 4.086 (CI 95 % 2.390–6.985; p < 0.001). According to CART the most important variable predicting evolution to RSE was the impaired consciousness before treatment, followed by acute symptomatic hypoxic etiology and periodic EEG patterns. The decision tree identified 14 nodes with a risk of evolution to RSE ranging from 1.5 % to 90.8 %. The overall percentage of success in classifying patients of the decision tree was 79.4 %; the percentage of accurate prediction was high, 94.1 %, for those patients not progressing to RSE and moderate, 49.8 %, for patients evolving to RSE.

Conclusions

Decision-tree analysis provided a meaningful risk stratification based on few variables that are easily obtained at SE first evaluation: consciousness before treatment, etiology, and severe EEG patterns. CART models must be viewed as potential new method for the stratification RSE at single subject level deserving further exploration and validation.
背景和目的:利用机器学习技术确定难治性癫痫状态(RSE)进展的预测因素:分析对象包括在摩德纳学术医院登记的连续 9 年间年龄≥ 14 岁的 SE 患者。我们利用逻辑回归和分类与回归树分析(CART)的机器学习分析方法评估了发展为 RSE 的风险,以建立发展为 RSE 的预测模型:研究共纳入了 705 名 SE 患者,其中 33%(233/705)发展为 RSE。进展为 RSE 是 30 天死亡率的独立风险因素,根据之前确定的可能的单变量混杂因素调整后的 OR 为 4.086(CI 95 % 2.390-6.985;P 结论:决策树分析提供了一个有意义的预测模型:决策树分析提供了一种有意义的风险分层方法,其依据是在 SE 首次评估时很容易获得的几个变量:治疗前的意识、病因和严重脑电图模式。必须将 CART 模型视为在单个受试者水平上对 RSE 进行分层的潜在新方法,值得进一步探索和验证。
{"title":"Progression to refractory status epilepticus: A machine learning analysis by means of classification and regression tree analysis","authors":"Stefano Meletti ,&nbsp;Giada Giovannini ,&nbsp;Simona Lattanzi ,&nbsp;Arian Zaboli ,&nbsp;Niccolò Orlandi ,&nbsp;Gianni Turcato ,&nbsp;Francesco Brigo","doi":"10.1016/j.yebeh.2024.110005","DOIUrl":"10.1016/j.yebeh.2024.110005","url":null,"abstract":"<div><h3>Background and Objectives</h3><div>to identify predictors of progression to refractory status epilepticus (RSE) using a machine learning technique.</div></div><div><h3>Methods</h3><div>Consecutive patients aged ≥ 14 years with SE registered in a 9-years period at Modena Academic Hospital were included in the analysis. We evaluated the risk of progression to RSE using logistic regression and a machine learning analysis by means of classification and regression tree analysis (CART) to develop a predictive model of progression to RSE.</div></div><div><h3>Results</h3><div>705 patients with SE were included in the study; of those, 33 % (233/705) evolved to RSE. The progression to RSE was an independent risk factor for 30-day mortality, with an OR adjusted for previously identified possible univariate confounders of 4.086 (CI 95 % 2.390–6.985; p &lt; 0.001). According to CART the most important variable predicting evolution to RSE was the impaired consciousness before treatment, followed by acute symptomatic hypoxic etiology and periodic EEG patterns. The decision tree identified 14 nodes with a risk of evolution to RSE ranging from 1.5 % to 90.8 %. The overall percentage of success in classifying patients of the decision tree was 79.4 %; the percentage of accurate prediction was high, 94.1 %, for those patients not progressing to RSE and moderate, 49.8 %, for patients evolving to RSE.</div></div><div><h3>Conclusions</h3><div>Decision-tree analysis provided a meaningful risk stratification based on few variables that are easily obtained at SE first evaluation: consciousness before treatment, etiology, and severe EEG patterns. CART models must be viewed as potential new method for the stratification RSE at single subject level deserving further exploration and validation.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":null,"pages":null},"PeriodicalIF":2.3,"publicationDate":"2024-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.sciencedirect.com/science/article/pii/S152550502400386X/pdfft?md5=64fb06f453f1a384d1ba397575f0b2c0&pid=1-s2.0-S152550502400386X-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282326","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","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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