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Double Stigma: Reluctance to be referred to a psychiatrist among people with epilepsy and psychiatric comorbidities. 双重耻辱:患有癫痫和精神疾病合并症的人不愿转诊给精神科医生。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-10 DOI: 10.1016/j.yebeh.2024.110196
Si-Lei Fong, Aminath Shauna, Kheng-Seang Lim, Chong-Guan Ng, Xuen Yu, Siew-Tim Lai, Hui-Jan Tan, Juen-Kiem Tan, Venus Tang, Chong-Tin Tan

Introduction: Psychiatric comorbidities such as depression and anxiety disorders are highly prevalent among people with epilepsy (PWE). These two co-occurring chronic illnesses could lead to double stigma and negatively impact every aspect of psychiatric and epilepsy care for PWE, especially in help-seeking behavior. We aimed to identify the socio-demographic and clinical factors contributing to reluctance to be referred to a psychiatrist among PWE.

Methods: A prospective cross-sectional study was conducted at a tertiary teaching hospital in Kuala Lumpur, Malaysia. Psychological screening was done using the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and General Anxiety Disorder (GAD-7) questionnaire. Patients screened positive were offered psychiatric referrals and given an early psychiatric clinic appointment if they agreed to the referral. The reasons for those who refused the referral were noted.

Results: Out of 585 patients, 91 (15.5 %) were screened positive for depression and/or anxiety. Eighteen patients were excluded from the study due to pre-existing psychiatric disorders. Of the remaining 73 patients, 23 (31.5 %) agreed to be referred to a psychiatrist. Only 17 (23.3 %) attended the psychiatrist appointment. A total of 11 (15.1 %) and one (1.4 %) patients were subsequently diagnosed with major depressive disorder and generalized anxiety disorder, respectively. Another 50 (68.5 %) patients were not referred to a psychiatrist, predominantly (n = 43, 58.9 %) due to reluctance to be referred to a psychiatrist. The reasons included avoidance of referral likely related to stigma (n = 22, 51.2 %), self-reliance, family and caregivers' disapproval of referral, and logistic difficulty. The mean scores in NDDI-E and GAD-7 in the referred group were higher than the not-referred group but not statistically significant (NDDI-E: 17.8 ± 3.6 vs. 16.5 ± 2.5, p = 0.072; GAD-7: 12.4 ± 5.70 vs. 9.8 ± 5.4, p = 0.061).

Conclusion: A significant number of PWE were reluctant to receive psychiatric referrals predominantly due to self-avoidance or family and caregiver disapproval of referral likely related to stigma. An integrated epilepsy care management model is recommended.

精神合并症,如抑郁症和焦虑症在癫痫患者(PWE)中非常普遍。这两种共同发生的慢性疾病可能导致双重耻辱,并对PWE的精神病学和癫痫护理的各个方面产生负面影响,特别是在寻求帮助的行为方面。我们的目的是确定导致PWE不愿转诊到精神科医生的社会人口学和临床因素。方法:在马来西亚吉隆坡的一家三级教学医院进行前瞻性横断面研究。使用癫痫神经障碍抑郁量表(NDDI-E)和一般焦虑障碍(GAD-7)问卷进行心理筛查。筛检呈阳性的病人被转诊到精神科,如果他们同意转诊,就可以尽早预约精神科诊所。委员会指出了拒绝转诊的人的理由。结果:在585例患者中,91例(15.5%)筛查出抑郁和/或焦虑阳性。18名患者因先前存在精神障碍而被排除在研究之外。在其余73名患者中,23名(31.5%)同意转介给精神科医生。只有17人(23.3%)参加了精神科医生的预约。随后分别有11例(15.1%)和1例(1.4%)患者被诊断为重度抑郁症和广泛性焦虑症。另有50例(68.5%)患者没有转诊到精神科医生,主要是(n = 43, 58.9%)由于不愿转诊到精神科医生。原因包括避免转诊可能与耻辱感有关(n = 22, 51.2%)、自力更生、家人和照顾者不赞成转诊以及后勤困难。参考组NDDI-E、GAD-7平均评分高于未参考组,但差异无统计学意义(NDDI-E: 17.8±3.6∶16.5±2.5,p = 0.072;GAD-7: 12.4±5.70∶9.8±5.4,p = 0.061)。结论:相当数量的PWE不愿接受精神病学转诊主要是由于自我回避或家人和照顾者不赞成转诊可能与耻辱有关。建议采用综合癫痫护理管理模式。
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引用次数: 0
The comparison of hand grip strength between healthy volunteers and individuals diagnosed with temporal lobe epilepsy. 健康志愿者与颞叶癫痫患者的握力比较。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-10 DOI: 10.1016/j.yebeh.2024.110201
Ece Hilal, Fatma Meltem Usteki, Serkan Aksu, Semai Bek, Gulnihal Kutlu

Purpose: Hand grip strength (HGS) is crucial for the performance of daily activities and has been linked to various clinical parameters, including morbidity, mortality, and both physical and cognitive functions. While HGS has been shown to decline in numerous diseases, it has not been previously examined in patients diagnosed with temporal lobe epilepsy. This study aims to investigate the differences in hand grip strength between individuals with temporal lobe epilepsy and healthy volunteers.

Methods: A total of forty-four patients diagnosed with temporal lobe epilepsy (22 with controlled epilepsy and 22 with drug-resistant epilepsy) and 22 healthy volunteers were followed up at the Epilepsy and Sleep Center. Maximum and mean hand grip strength measurements were obtained for both the dominant and non-dominant hands using a digital hand dynamometer. Based on the assumption of normality, data from healthy volunteers and all epilepsy patients were analyzed using independent samples t-tests or Mann-Whitney U tests. Comparisons among the resistant epilepsy group, controlled epilepsy group, and healthy volunteer group were conducted using one-way analysis of variance (ANOVA) or Kruskal-Wallis tests. Pairwise comparisons were performed using independent samples t-tests or Mann-Whitney U tests. Correlations were assessed using Spearman's rank correlation tests.

Results: The mean age of the sample was 32.56 years (SD = ±1.29). The sample comprised 24 male and 42 female participants. The average duration of education was 11.68 ± 3.20 years, while the average age of onset of epilepsy among patients was 16.39 ± 10.95 years, with a disease duration of 16.45 ± 10.97 years. Significant differences were observed in all hand grip strength variables between healthy volunteers and individuals diagnosed with temporal lobe epilepsy. Notably, there were significant differences in hand grip strength between healthy volunteers and the patient group; however, no differences were found between subgroups with controlled seizures and those with drug-resistant epilepsy.

Conclusion: A significant reduction in hand grip strength has been observed in patients diagnosed with temporal lobe epilepsy, regardless of treatment resistance and disease severity. This decline may be attributed to several factors, including impaired motor coordination resulting from seizures, side effects of medications, and mood disturbances. Further comprehensive studies are necessary to explore the relationship between these underlying factors and hand grip strength, as well as its association with other clinical variables such as functionality and mortality.

目的:手部握力(HGS)对日常活动的表现至关重要,并与各种临床参数相关,包括发病率、死亡率以及身体和认知功能。虽然HGS已被证明在许多疾病中下降,但以前尚未在被诊断为颞叶癫痫的患者中进行检查。本研究旨在探讨颞叶癫痫患者与健康志愿者手握力的差异。方法:在癫痫与睡眠中心对44例颞叶癫痫患者(控制型癫痫22例,耐药型癫痫22例)和22例健康志愿者进行随访。使用数字手测力仪获得优势手和非优势手的最大和平均握力测量值。基于正态性假设,采用独立样本t检验或Mann-Whitney U检验对健康志愿者和所有癫痫患者的数据进行分析。采用单因素方差分析(ANOVA)或Kruskal-Wallis检验对抗癫痫组、控制癫痫组和健康志愿者组进行比较。两两比较采用独立样本t检验或Mann-Whitney U检验。使用Spearman秩相关检验评估相关性。结果:患者平均年龄32.56岁(SD =±1.29)。样本包括24名男性和42名女性参与者。患者平均受教育年限为11.68±3.20年,平均发病年龄为16.39±10.95岁,发病时间为16.45±10.97年。在健康志愿者和诊断为颞叶癫痫的个体之间,观察到所有握力变量的显著差异。值得注意的是,健康志愿者和患者组的握力有显著差异;然而,在控制癫痫发作的亚组和耐药癫痫的亚组之间没有发现差异。结论:在诊断为颞叶癫痫的患者中,无论治疗抵抗和疾病严重程度如何,手部握力均显著降低。这种下降可能归因于几个因素,包括癫痫发作导致的运动协调受损、药物副作用和情绪障碍。需要进一步的综合研究来探索这些潜在因素与手握力之间的关系,以及它与其他临床变量(如功能和死亡率)的关系。
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引用次数: 0
Infantile epileptic spasms syndrome: When spasms come out of the blue. 婴儿癫痫性痉挛综合征:当痉挛突然出现。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-10 DOI: 10.1016/j.yebeh.2024.110180
Marta Conti, Sara Matricardi, Ludovica M Piscitello, Marina Auconi, Ida Cursio, Alessandra Terracciano, Federico Vigevano, Nicola Specchio, Carla Marini, Lucia Fusco

Background: This study evaluates the electroclinical features of infantile epileptic spasms syndrome (IESS) suddenly appearing in previously normal patients, aiming to describe clinical outcomes and independent predictors.

Method: We retrospectively selected a homogeneous group of patients with IESS from two Italian centers. All patients had normal development prior to IESS onset and a follow-up period lasting at least one year. Patients with clinically relevant risk factors, other seizure types, brain structural abnormalities or known genetic diseases were excluded. The BASED score was used to standardize interictal EEG patterns.

Results: Forty-three patients were enrolled, with a median age at IESS onset of 6 months; median follow-up was 43 months. At onset, 65.11 % exhibited mild behavioral changes, including irritability and poor social smile. At firstEEG, epileptic encephalopathy (EE) was prevalent during wakefulness (69.76 %; median BASED score 4) and sleep (81.40 %; median BASED score 5). Within 15 days of treatment, 83.72 % achieved seizure freedom, primarily with ACTH depot (90.70 %). After six months, all patients were seizure- and EE-free. At the last follow-up, 81.40 % had normal cognitive functioning; in the remaining, specific neurodevelopmental disorders, predominantly involving language were reported. No statistically significant differences were found in the electroclinical presentation and neuropsychological outcome.

Conclusion: We describe a subgroup of IESS patients with prompt response to treatment, long-term seizure freedom, and absence of severe neurodevelopmental impact. Our data suggest that within the IESS spectrum, there is a distinctive subgroup with global favorable outcome. Key clinical features predictors of good outcome could include normal development prior to IESS and early response to treatment.

背景:本研究评估了之前正常患者突然出现的婴儿癫痫痉挛综合征(IESS)的电临床特征,旨在描述临床结局和独立预测因素。方法:我们回顾性地从两个意大利中心选择了一组同质的IESS患者。所有患者在IESS发病前发育正常,随访期至少1年。排除有临床相关危险因素、其他癫痫类型、脑结构异常或已知遗传疾病的患者。basis评分用于标准化间歇期脑电图模式。结果:纳入43例患者,IESS发病时的中位年龄为6个月;中位随访时间为43个月。开始时,65.11%表现出轻微的行为改变,包括易怒和不善社交的微笑。在第一次steeg中,癫痫性脑病(EE)在清醒期间普遍存在(69.76%;basis评分中位数为4)和睡眠(81.40%;在治疗15天内,83.72%的患者实现了癫痫发作自由,主要是ACTH库(90.70%)。6个月后,所有患者均无癫痫发作和ee。最后一次随访时,81.40%的患者认知功能正常;在剩下的病例中,有特定的神经发育障碍,主要涉及语言。电临床表现和神经心理结果无统计学差异。结论:我们描述了一个对治疗反应迅速,长期癫痫发作自由,没有严重神经发育影响的IESS患者亚组。我们的数据表明,在IESS频谱中,有一个独特的亚组具有全局有利的结果。良好预后的关键临床特征预测因素可能包括IESS前的正常发育和对治疗的早期反应。
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引用次数: 0
Psychometric properties of the Malay and Chinese Epilepsy Self-Stigma Scale (ESSS). 马来和华人癫痫自我污名量表(ESSS)的心理测量特征。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-10 DOI: 10.1016/j.yebeh.2024.110176
Woon-Hin Ching, Ming-Yi Soon, Joe-Lynn Yee, Zhi-Jien Chia, Kheng-Seang Lim, Si-Lei Fong, Xuen Yu, Zhi-Qian Ong, Izumi Kuramochi

Objective: Self-stigma means internalizing negative beliefs and attitudes associated with stigmatized identity. This study aimed to translate and validate the Malay and Chinese versions of the Epilepsy Self-Stigma Scale (ESSS).

Methods: The Epilepsy Self-Stigma Scale was translated into the Malay (ESSS-M) and Chinese versions (ESSS-C) according to standard principles and were tested in 100 Malay and 100 Chinese-speaking people with epilepsy (PWE) respectively. Psychometric evaluations were done based on equal item variance, convergent and discriminant validity, construct validity and reliability. Correlation analyses were carried out between the ESSS and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and Generalized Anxiety Disorder-7 (GAD-7).

Results: For the ESSS-M, 100 Malay-speaking PWE with a mean age of 42.25 years (±15.18) were recruited. Exploratory factor analysis identified eight items loaded on three factors: "Internalization of stigma", "Societal incomprehension", and "Confidentiality". However, item 1 was loaded under a different component from the initial paper, conceptualized as confidentiality. For the ESSS-C, 100 Chinese-speaking participants with a mean age of 41.07 years (±15.57). Exploratory factor analysis identified three loading factors similar to the original scale: "Internalization of stigma", "Societal incomprehension", and "Confidentiality". Both ESSS-M and ESSS-C scales showed significant correlations with NDDI-E and GAD-7 scores, showcasing substantial construct validity. The Cronbach's alpha values were α = 0.822 for the ESSS-M and α = 0.831 for the ESSS-C.

Conclusion: Both the ESSS-M and ESSS-C were reliable and valid for measuring epilepsy self-stigma among the Malay- and Chinese-speaking PWE in Malaysia.

目的:自我污名化是指内化与污名化身份相关的消极信念和态度。本研究的目的是翻译和验证马来文和中文版本的癫痫自我污名量表(ESSS)。方法:将《癫痫自我耻感量表》按标准原则翻译成马来文(ESSS-M)和中文(ESSS-C),分别对100名马来文和100名华语癫痫患者(PWE)进行测试。心理测量以等项目方差、收敛效度和判别效度、构念效度和信度为基础进行评价。将ESSS与癫痫神经障碍抑郁量表(NDDI-E)和广泛性焦虑障碍-7 (GAD-7)进行相关性分析。结果:在ess - m中,招募了100名平均年龄为42.25岁(±15.18)的讲马来语的PWE。探索性因素分析确定了8个项目,加载在三个因素上:“耻辱内化”、“社会不理解”和“保密”。但是,项目1载入了与最初文件不同的组成部分,其概念是保密。在ess - c中,100名说中文的参与者,平均年龄41.07岁(±15.57岁)。探索性因子分析确定了与原量表相似的三个负荷因子:“污名内化”、“社会不理解”和“保密”。sess - m和sess - c量表均与ndi - e和GAD-7得分呈显著相关,具有较高的结构效度。sss - m和sss - c的Cronbach α值分别为α = 0.822和α = 0.831。结论:ESSS-M和ESSS-C在马来西亚马来语和汉语PWE中测量癫痫自我耻辱是可靠和有效的。
{"title":"Psychometric properties of the Malay and Chinese Epilepsy Self-Stigma Scale (ESSS).","authors":"Woon-Hin Ching, Ming-Yi Soon, Joe-Lynn Yee, Zhi-Jien Chia, Kheng-Seang Lim, Si-Lei Fong, Xuen Yu, Zhi-Qian Ong, Izumi Kuramochi","doi":"10.1016/j.yebeh.2024.110176","DOIUrl":"https://doi.org/10.1016/j.yebeh.2024.110176","url":null,"abstract":"<p><strong>Objective: </strong>Self-stigma means internalizing negative beliefs and attitudes associated with stigmatized identity. This study aimed to translate and validate the Malay and Chinese versions of the Epilepsy Self-Stigma Scale (ESSS).</p><p><strong>Methods: </strong>The Epilepsy Self-Stigma Scale was translated into the Malay (ESSS-M) and Chinese versions (ESSS-C) according to standard principles and were tested in 100 Malay and 100 Chinese-speaking people with epilepsy (PWE) respectively. Psychometric evaluations were done based on equal item variance, convergent and discriminant validity, construct validity and reliability. Correlation analyses were carried out between the ESSS and the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E) and Generalized Anxiety Disorder-7 (GAD-7).</p><p><strong>Results: </strong>For the ESSS-M, 100 Malay-speaking PWE with a mean age of 42.25 years (±15.18) were recruited. Exploratory factor analysis identified eight items loaded on three factors: \"Internalization of stigma\", \"Societal incomprehension\", and \"Confidentiality\". However, item 1 was loaded under a different component from the initial paper, conceptualized as confidentiality. For the ESSS-C, 100 Chinese-speaking participants with a mean age of 41.07 years (±15.57). Exploratory factor analysis identified three loading factors similar to the original scale: \"Internalization of stigma\", \"Societal incomprehension\", and \"Confidentiality\". Both ESSS-M and ESSS-C scales showed significant correlations with NDDI-E and GAD-7 scores, showcasing substantial construct validity. The Cronbach's alpha values were α = 0.822 for the ESSS-M and α = 0.831 for the ESSS-C.</p><p><strong>Conclusion: </strong>Both the ESSS-M and ESSS-C were reliable and valid for measuring epilepsy self-stigma among the Malay- and Chinese-speaking PWE in Malaysia.</p>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"110176"},"PeriodicalIF":2.3,"publicationDate":"2024-12-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142812543","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
Evaluating the patient needs and tolerability of Clobazam liquid formulation (Likozam® 1 mg/mL): A French patient and care-givers' centered survey. 评价患者对氯巴赞液体制剂(利可赞®1mg /mL)的需求和耐受性:一项以法国患者和护理人员为中心的调查。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-10 DOI: 10.1016/j.yebeh.2024.110183
Giovanna Scorrano, Caroline Delattre, Anne Emmanuel Leiber, Rima Nabbout

Background: Clobazam (CLB) is a 1,5-benzodiazepine, currently used as add-on anti-seizure medication in complex and drug-resistant epilepsies. In France, CLB is available in three galenic forms and in a masterful one. The aim of this survey is to assess the experience of patients and families on CLB galenic forms focusing on CLB liquid formulation, Likozam® 1 mg/ml exclusively available in hospitals' pharmacies.

Methods: We performed a survey on the use of benzodiazepines with the Dravet syndrome Alliance (ASD) France. The survey was distributed on their site (http://www.dravet.fr/) and addressed to caregivers of patients who received CLB in any galenic form. The survey was co-developed by ASD and the Reference Centre for Rare Epilepsies, Necker. It included both open and closed questions. We used a 5-point Likert scale to assess the caregiver opinion on every formulation received, addressing medication palatability, dose adaptability, ability to take the drug without help, easiness of swallowing and access to treatment. Finally, we had some additional questions for the CLB liquid form.

Results: Eighty-seven patients aged 2 to 41 years (mean age 13, standard deviation ± 6.6) participated in this study. They presented Dravet syndrome (DS) (71/87, 82 %), Lennox-Gastaut syndrome (LGS) (4/87, 4 %), infantile epileptic spasms syndrome (IESS) (1/87, 1 %), and epilepsy with myoclonic atonic seizures (EMAtS) (1/87, 1 %). The epilepsy syndrome was unknown for 10/87 (12 %). The mean age at the first CLB prescription was 9 years (standard deviation ± 5.9, range age 1-35 years). Most patients (69/87, 79.3 %) had polytherapy. CLB most frequent formulations were the liquid (Likozam® 1 mg/mL) (44/87, 50.5 %) and the pill formulation (Urbanyl® 5 mg) (43/87, 49.4 %). The liquid formulation was selected as the most appropriate by 49,4% of caregivers, due to the greater easiness of administration and the dose adaptability. The easiness of access to treatment was the major issue against this formulation as it is currently available only in hospitals' pharmacies.

Conclusion: Our study revealed an unmet need of CLB liquid form mainly in infants and young children, where easy to swallow and adaptable small doses are required during CLB introduction or discontinuation. However, some impactful issues such as access to treatment, palatability or liquid quantity administered should be optimized to improve patient and families' acceptability of liquid CLB.

背景:氯巴唑(Clobazam, CLB)是一种1,5-苯二氮卓类药物,目前被用作复杂和耐药癫痫的附加抗癫痫药物。在法国,CLB有三种galenic和一种masterful形式。本调查的目的是评估患者和家庭对CLB galenic形式的体验,重点是CLB液体制剂,利可赞®1毫克/毫升,仅在医院药房供应。方法:我们与法国Dravet综合征联盟(ASD)一起对苯二氮卓类药物的使用进行调查。该调查在他们的网站(http://www.dravet.fr/)上分发,并发给接受任何形式CLB的患者的护理人员。这项调查是由ASD和罕见癫痫参考中心共同开发的。它包括开放式和封闭式问题。我们使用5分李克特量表来评估护理人员对收到的每个配方的意见,包括药物的适口性、剂量适应性、在没有帮助的情况下服用药物的能力、吞咽的容易程度和获得治疗的机会。最后,我们有一些关于CLB液体形式的附加问题。结果:87例患者,年龄2 ~ 41岁,平均年龄13岁,标准差±6.6。他们表现为Dravet综合征(71/ 87,82 %)、lenox - gastaut综合征(4/ 87,4 %)、婴儿癫痫痉挛综合征(1/ 87,1 %)和癫痫伴肌阵挛性失张力发作(1/ 87,1 %)。10/87(12%)患者癫痫综合征不明。首次服用CLB处方的平均年龄为9岁(标准差±5.9,年龄范围1-35岁)。多数患者(69/87,79.3%)采用综合治疗。CLB最常见的制剂为液体制剂(利可赞®1 mg/mL)(44/ 87,50.5%)和丸剂制剂(Urbanyl®5 mg)(43/ 87,49.4%)。49.4%的护理人员选择液体制剂,因为液体制剂给药方便,剂量适应性强。容易获得治疗是反对这种配方的主要问题,因为它目前只在医院的药房提供。结论:我们的研究揭示了CLB液体形式的需求未得到满足,主要是婴幼儿,在CLB引入或停药期间需要易于吞咽和适应性小剂量。然而,一些有影响的问题,如获得治疗,适口性或给药的液体量应优化,以提高患者和家属对液体CLB的可接受性。
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引用次数: 0
Impact of problem-based learning on stigma toward epilepsy among medical students: An intervention verification study. 基于问题的学习对医学生癫痫病耻感的影响:一项干预验证研究。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-09 DOI: 10.1016/j.yebeh.2024.110200
Yuto Arai, Tohru Okanishi, Yuko Nakamura, Kento Ohta, Masaru Ueki, Izumi Kuramochi, Yoshihiro Maegaki

Introduction: Stigma toward epilepsy is widespread not only among the general population but also among healthcare professionals. Therefore, the necessity of providing educational opportunities for epilepsy from an early stage in student education has been emphasized. Recently, problem-based learning (PBL) has gained importance in higher education, with reports indicating that it not only enhances knowledge but also reduces stigma.

Objective: This study aimed to evaluate the effects of an epilepsy-related problem-based learning (E-PBL) program on medical students' stigma toward epilepsy. Additionally, we assessed whether the E-PBL program improved medical students' knowledge of epilepsy.

Materials and methods: Participants were fourth-year medical students. The E-PBL program was conducted over 5 days, from July 3, 2023 to July 7, 2023. The outcomes included the Japanese version of the Public Attitudes Toward Epilepsy (PATE-J) scale, which was used to assess stigma toward epilepsy before and after the E-PBL program. We also administered a short, structured questionnaire to assess participants' knowledge of epilepsy.

Results: In total, 112 students were examined. The total PATE-J score was significantly lower after E-PBL (median: 18; interquartile range [IQR]: 14-20) than before PBL (median: 19; IQR: 16-23) (p = 0.013). Additionally, the number of correct responses to the short, structured questionnaire after the E-PBL program was significantly higher than before the program (p < 0.001).

Conclusions: E-PBL programs have the potential to decrease stigma toward epilepsy while enhancing knowledge about epilepsy among medical students. E-PBL represents a novel educational approach for medical students in the context of epilepsy education.

引言:对癫痫的耻辱感不仅在普通人群中普遍存在,而且在卫生保健专业人员中也很普遍。因此,从学生教育的早期阶段就提供癫痫教育机会的必要性得到了强调。最近,基于问题的学习(PBL)在高等教育中变得越来越重要,有报告表明它不仅可以提高知识,还可以减少污名。目的:本研究旨在评估癫痫相关问题学习(E-PBL)课程对医学生癫痫病耻感的影响。此外,我们评估了E-PBL项目是否提高了医学生对癫痫的认识。材料与方法:研究对象为四年级医学生。从2023年7月3日到7月7日,E-PBL项目进行了5天。结果包括日本版的公众对癫痫的态度(PATE-J)量表,该量表用于评估E-PBL项目前后对癫痫的耻耻感。我们还进行了一份简短的结构化问卷,以评估参与者对癫痫的认识。结果:共检测学生112名。E-PBL后总pte - j评分显著降低(中位数:18;四分位数间距[IQR]: 14-20)比PBL前(中位数:19;IQR: 16-23) (p = 0.013)。此外,在E-PBL项目后,对简短的结构化问卷的正确回答数量显著高于项目前(p结论:E-PBL项目有可能减少对癫痫的耻辱感,同时提高医学生对癫痫的认识。E-PBL为医学生癫痫教育提供了一种新颖的教学方法。
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引用次数: 0
What is the impact of etiology, lead time to treatment, and parental awareness on outcomes in infantile epileptic spasm syndrome? 病因、治疗前置时间和父母意识对婴儿癫痫痉挛综合征结局的影响是什么?
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-05 DOI: 10.1016/j.yebeh.2024.110178
Deniz Menderes, Esra Serdaroğlu, Tuğba Hırfanoğlu, Ayşe Serdaroğlu, Ebru Arhan

Objective: Infantile epileptic spasm syndrome (IESS) is a kind of developmental epileptic encephalopathy that can lead to severe outcomes, including drug-resistant epilepsy and impaired neurodevelopment. The underlying etiology, early diagnosis, and adequate treatment impact the outcome. Our study focused on examining the factors that influence the prognosis and the level of knowledge among families regarding IESS.

Methods: In the Department of Pediatric Neurology at Gazi University Hospital, we examined 62 IESS children's demographics, neuroimaging, metabolic and genetic findings, seizure characteristics, treatment choices, and long-term outcomes. Our study examined family awareness of seizures, lead time to treatment(LTT), and their impact on prognosis.

Results: Forty-two (67.8 %) patients presented with a symptomatic cause, with over half experiencing intraventricular hemorrhage and/or periventricular leukomalacia attributable to prematurity. The hormonal therapy (tetracosactide or oral prednisolone) was the preferred treatment. Treatment was effective for two-thirds of the patients. Nevertheless, hardly 50 % of the families acknowledged the "event" as a seizure. However, 34 (61 %) individuals had sought medical advice from a doctor during the first seven days. The mean time from the start of seizures to seeking medical care was 9.2 ± 5.7 days.

Conclusion: Our research revealed that the etiology was the most significant factor influencing the long-term outcomes of IESS. Additionally, we demonstrated that the clinicians who initially encountered the patients promptly referred them to pediatric neurology departments, despite the fact that the families' seizure awareness was poor. To help prevent this circumstance, it is important to provide information about infantile spasms to the families of high-risk infants.

目的:婴儿癫痫痉挛综合征(IESS)是一种发育性癫痫性脑病,可导致严重后果,包括耐药癫痫和神经发育受损。潜在的病因,早期诊断和适当的治疗影响结果。本研究旨在探讨影响预后的因素及家庭对IESS的认知水平。方法:在Gazi大学医院儿科神经内科,我们检查了62名IESS儿童的人口统计学、神经影像学、代谢和遗传发现、癫痫发作特征、治疗选择和长期结局。我们的研究考察了家庭对癫痫发作的认识、治疗前时间(LTT)及其对预后的影响。结果:42例(67.8%)患者出现症状性原因,超过一半的患者出现脑室内出血和/或脑室周围白质软化,可归因于早产。激素治疗(四环素或口服强的松龙)是首选的治疗方法。治疗对三分之二的患者有效。然而,只有不到50%的家庭承认这个“事件”是扣押。然而,34人(61%)在头7天内曾向医生寻求医疗建议。从癫痫发作到就医平均时间为9.2±5.7天。结论:我们的研究表明,病因是影响IESS长期预后的最重要因素。此外,我们证明了最初遇到患者的临床医生立即将他们转到儿科神经科,尽管事实上家庭对癫痫发作的认识很差。为了帮助预防这种情况,向高危婴儿的家庭提供有关婴儿痉挛的信息是很重要的。
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引用次数: 0
External validation of the Memory Assessment Clinics Scale for Epilepsy (MAC-E). 癫痫记忆评估临床量表(MAC-E)的外部验证
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-05 DOI: 10.1016/j.yebeh.2024.110168
Kayela Arrotta, Brittany Lapin, Margaret Miller, Thomas Hogan, William B Barr, Daniel Friedman, Erica Cotton, Stephan Schuele, Samuel Wiebe, Lara Jehi, Robyn M Busch

Objective: This study aimed to externally validate the Memory Assessment Clinics Scale for Epilepsy (MAC-E), a brief self-report measure of subjective memory complaints in adults with epilepsy.

Methods: A cross-sectional study was conducted including adults with focal pharmacoresistant epilepsy from three Level 4 epilepsy centers in the U.S., who completed the MAC-E as part of a clinical neuropsychological evaluation. Confirmatory factor analysis was conducted, and goodness-of-fit criteria were calculated to assess model fit: comparative fit index (CFI), root mean square error of approximation (RMSEA), and standardized root mean residual (SRMR). Item response theory models were constructed, and Mokken analysis was used to assess discrimination and unidimensionality. Internal consistency was evaluated with McDonald's Omega.

Results: There were 191 patients included in the study (mean age = 41 ± 14, 51 % female, 87 % white race). Confirmatory factor analysis supported the 5-factor structure of the MAC-E identified in prior research (CFI = 0.989, RMSEA = 0.056, SRMR = 0.069) with high standardized loadings and R2 values for each of the 5 factors (0.58-0.91 and 0.34-0.82, respectively). MAC-E items demonstrated high levels of discrimination as well as the ability to evaluate across the entirety of each latent trait. Score responses were uniformly distributed across latent traits, and unidimensionality was established by factor (all H coefficients > 0.4). Internal consistency was high across factors (omega range: 0.77-0.88).

Conclusions: Results of this study demonstrate good external validation of the MAC-E in an independent, multicenter cohort of adults with epilepsy. These findings provide further support that the MAC-E is a psychometrically valid, self-report instrument to assess every-day memory abilities in adults with epilepsy in both clinical and research settings.

目的:本研究旨在外部验证癫痫记忆评估临床量表(MAC-E),这是一种用于评估成人癫痫患者主观记忆抱怨的简短自我报告量表。方法:横断面研究包括来自美国三个4级癫痫中心的局灶性耐药癫痫患者,他们完成了MAC-E作为临床神经心理学评估的一部分。进行验证性因子分析,并计算拟合优度标准来评估模型拟合:比较拟合指数(CFI)、近似均方根误差(RMSEA)和标准化均方根残差(SRMR)。构建项目反应理论模型,并采用Mokken分析法评估歧视和单一性。内部一致性是用麦当劳的Omega来评估的。结果:共纳入191例患者(平均年龄41±14岁,女性51%,白人87%)。验证性因子分析支持前期研究确定的MAC-E的5因素结构(CFI = 0.989, RMSEA = 0.056, SRMR = 0.069),具有较高的标准化负荷,5个因素的R2值分别为0.58-0.91和0.34-0.82。MAC-E项目显示出高水平的辨别能力以及评估每个潜在特质的整体能力。得分反应在各潜在性状间均匀分布,以因子确定其单维性(所有H系数均为> 0.4)。各因素的内部一致性很高(ω范围:0.77-0.88)。结论:本研究结果在独立的多中心成人癫痫患者队列中证明了MAC-E的良好外部验证。这些发现进一步支持MAC-E是一种心理测量学上有效的自我报告工具,用于评估临床和研究环境中成人癫痫患者的日常记忆能力。
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引用次数: 0
Reconsidering the ethics of provocation techniques for Psychogenic Non-Epileptic Attacks and proposed ethical guidelines for use. 重新考虑非癫痫性心因性发作诱发技术的伦理,并提出使用伦理准则。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-05 DOI: 10.1016/j.yebeh.2024.110184
James Dolbow, Matt Deaton, Marshall Kirsch, Jeanne Lackamp, Jonathan Zande

Patients with psychogenic non-epileptic attacks (PNEA) are subject to considerable direct and indirect comorbid psycho-socio-economic impact from their condition. Fortunately, diagnosis and treatment of PNEA has shown to be both medically effective and cost-efficient, ultimately improving PNEA symptoms, mental health, quality of life, and healthcare resource utilization. Though provocation techniques for PNEA have proven highly effective in diagnosing and providing expedited treatment to these patients, they have recently begun to fall out of favor due to ethical concerns about their use. Today, over one-fourth of epilepsy monitoring units do not utilize PNEA provocation techniques in those suspected of the condition. Of the monitoring units that do, less than 10% have an established protocol, and only 20% reported patient consent. The ethics and implications of the methods of diagnosing PNEA have been debated for decades. Specifically, the ethicality of attempting to provoke PNEA episodes using the proven effective methods of suggestion, nocebo, and other techniques have often left clinicians and medical ethicists offering opposing views. Here we review the personal and societal costs of PNEA, the efficacy of these provocation techniques, and the ethical considerations regarding their use, with specific emphasis on the importance of how these techniques are described to patients, as to both ensure informed consent and removed deception. Additionally, addressing these concerns, we propose ethical guidelines for the use of provocation techniques for the diagnosis of PNEA, concluding that such techniques can be ethically applied when certain conditions are met.

心因性非癫痫发作(PNEA)的患者受到相当大的直接和间接的共病心理-社会经济影响。幸运的是,PNEA的诊断和治疗在医学上是有效和经济的,最终改善了PNEA的症状、心理健康、生活质量和医疗资源的利用。尽管PNEA的诱发技术已被证明在诊断和快速治疗这些患者方面非常有效,但由于对其使用的伦理担忧,它们最近开始失宠。今天,超过四分之一的癫痫监测单位不使用PNEA诱发技术在那些怀疑条件。在这样做的监测单位中,不到10%的单位有既定的方案,只有20%的单位报告了患者的同意。诊断PNEA方法的伦理和影响已经争论了几十年。具体来说,试图使用建议、反安慰剂和其他技术等已被证明有效的方法来引发PNEA发作的伦理性,往往会让临床医生和医学伦理学家提出反对意见。在这里,我们回顾了PNEA的个人和社会成本,这些挑衅技术的功效,以及关于它们的使用的伦理考虑,特别强调了如何向患者描述这些技术的重要性,以确保知情同意和消除欺骗。此外,为了解决这些问题,我们提出了在PNEA诊断中使用激发技术的伦理准则,结论是当满足某些条件时,这些技术可以在伦理上应用。
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引用次数: 0
Age-related semiology changes over time. 与年龄相关的符号学随着时间而变化。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-12-04 DOI: 10.1016/j.yebeh.2024.110185
Anthony Fine, Katherine Nickels

Understanding how seizure semiology changes with age is essential to determine the seizure onset zone. Epilepsy can be considered the prototypical neurologic disorder for demonstrating age-related changes over time. The maturational changes that occur in the brain over the lifespan demonstrate themselves most clearly through semiologic changes. Due to the immaturity of the neonatal brain, seizure recognition is challenging. Electroclinical seizures are classified as motor, non-motor, sequential, or unclassified and are typically focal in onset. During infancy, the most common seizure types are epileptic spasms, myoclonic, tonic, atonic, clonic, and hypomotor/behavioral arrest seizures. Correlation between seizure semiology and localization of seizure onset zone can be variable. The most observed seizure types in preschool-aged children are generalized myoclonic, generalized tonic, focal tonic, or clonic seizures. Many of the epileptic encephalopathies present at this age. Ictal behaviors continue to be limited, but lateralizing motor manifestations during focal seizures are better developed compared to infants. In school-aged children, the most common seizure types involve change in awareness. Seizure semiology at this age resembles that of adults, with increasing number and complexity of seizure components.

了解癫痫发作符号学如何随年龄变化是确定癫痫发作区必不可少的。癫痫可以被认为是典型的神经系统疾病,因为随着时间的推移,它显示出与年龄相关的变化。大脑在一生中发生的成熟变化通过符号学变化最清楚地证明了自己。由于新生儿大脑的不成熟,癫痫发作的识别是具有挑战性的。电临床发作分为运动性、非运动性、顺序性或非分类性,通常为局灶性发作。在婴儿期,最常见的癫痫发作类型是癫痫性痉挛、肌阵挛、强直、无张力、阵挛和运动减退/行为停止发作。癫痫发作符号学与癫痫发作区定位之间的相关性可能是可变的。学龄前儿童最常见的癫痫类型是全身性肌阵挛、全身性强直性、局灶性强直性或阵挛性发作。许多癫痫性脑病都出现在这个年龄。患儿的体征行为仍然有限,但局灶性癫痫发作时的偏侧运动表现比婴儿发展得更好。在学龄儿童中,最常见的癫痫类型包括意识的改变。这个年龄段的癫痫符号学与成年人相似,癫痫发作成分的数量和复杂性都在增加。
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引用次数: 0
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Epilepsy & Behavior
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