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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

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。
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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
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。
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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

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。
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引用次数: 0
How far are we from the best preclinical models of drug-resistant epilepsy? 我们离抗药性癫痫的最佳临床前模型还有多远?
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110029

Drug-resistant epilepsy has a high prevalence worldwide despite efforts such as the Epilepsy Therapy Screening Program conducted by the National Institute of Neurological Disorders and Stroke. It is indicated that drug-resistant epilepsy has various manifestations, and each pattern of manifestation can be modeled using precise experimental models. However, the experimental models used to identify new antiseizure medications to control drug-resistant epilepsy to date do not typically take into account various clinical factors associated with this condition. These factors include comorbidities, sex, age, frequency of seizures and neuroinflammation. It is accordingly necessary to identify the proper characteristics of each type of drug-resistant epilepsy to be mimicked in preclinical models. The use of preclinical models mimicking the characteristics of the different patterns of drug-resistant epilepsy will allow identifying new therapeutic strategies to control this disorder. It is also essential to consider the heterogeneity of clinical factors involved in the condition of drug resistance in epilepsy to get the proper preclinical models.

尽管美国国家神经疾病和中风研究所(National Institute of Neurological Disorders and Stroke)开展了 "癫痫治疗筛查计划"(Epilepsy Therapy Screening Program)等工作,但耐药性癫痫在全球的发病率仍然很高。有研究表明,耐药性癫痫有多种表现形式,每种表现形式都可以用精确的实验模型来模拟。然而,迄今为止用于确定新的抗癫痫药物以控制耐药性癫痫的实验模型通常并没有考虑到与该病症相关的各种临床因素。这些因素包括合并症、性别、年龄、癫痫发作频率和神经炎症。因此,有必要确定每种耐药性癫痫的适当特征,以便在临床前模型中进行模拟。利用临床前模型模拟不同类型耐药性癫痫的特征,将有助于确定控制这种疾病的新治疗策略。此外,还必须考虑癫痫耐药性所涉及的临床因素的异质性,以获得适当的临床前模型。
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引用次数: 0
Unveiling Saudi Physicians’ knowledge and attitude toward Psychogenic nonepileptic seizures (PNES): A cross-sectional study 揭示沙特医生对精神性非癫痫发作(PNES)的认识和态度:横断面研究。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110040

Objectives

To assess the knowledge and attitudes of Saudi physicians from different specialties towards Psychogenic Non-Epileptic Seizures (PNES) and identify the challenges faced in managing this condition.

Methods

In November 2023, a questionnaire was distributed online to physicians through official targeted medical specialties societies. In February 2024 the study was closed. The survey was conducted in English, including questions about socio-demographics, knowledge about PNES’s clinical presentation, diagnosis, management, respondents’ experience, confidence and challenges in handling PNES cases.

Results

A total of 222 responses were collected. The overall knowledge score was 34.51 ± 9.67 out of 60, with 64.9 % of participants demonstrating good knowledge (score ≥ 50 %) and 35.1 % showing poor knowledge (score < 50 %). The overall attitude score was 21.65 ± 7.49 out of 40, with 55.4 % of participants demonstrating a favorable attitude towards PNES diagnosis & management (score ≥ 50 %), while 44.6 % displayed an unfavorable attitude (score < 50 %). Neurologists and psychiatrists exhibited higher knowledge and more positive attitudes compared to other specialties. Emergency physicians, internists, and pediatricians showed the lowest scores of knowledge & attitudes. Significant challenges included a lack of knowledge (41.0 %), insufficient diagnostic resources (35.6 %), and poor cross-disciplinary collaboration (36.0 %).

Significance

There is a critical need for improved knowledge about PNES characteristics, management, and training resources to enhance physicians’ attitudes toward PNES patients, particularly among specialties that frequently encounter these patients. Addressing the identified gaps can lead to better patient outcomes through timely diagnosis and appropriate treatment referrals.
目的评估沙特不同专业的医生对精神性非癫痫发作(PNES)的认识和态度,并确定在管理这种疾病时所面临的挑战:2023 年 11 月,通过官方目标医学专科协会向医生在线发放了调查问卷。2024 年 2 月,研究结束。调查以英语进行,内容包括社会人口统计学、对 PNES 临床表现的了解、诊断、管理、受访者在处理 PNES 病例时的经验、信心和挑战等问题:结果:共收集到 222 份回复。总体知识得分为 34.51 ± 9.67(满分 60 分),64.9% 的参与者表现出良好的知识水平(得分≥ 50%),35.1% 的参与者表现出较差的知识水平(得分 意义重大:亟需加强对 PNES 特征、管理和培训资源的了解,以提高医生对 PNES 患者的态度,尤其是在经常遇到此类患者的专科中。缩小已发现的差距可通过及时诊断和适当的治疗转诊为患者带来更好的治疗效果。
{"title":"Unveiling Saudi Physicians’ knowledge and attitude toward Psychogenic nonepileptic seizures (PNES): A cross-sectional study","authors":"","doi":"10.1016/j.yebeh.2024.110040","DOIUrl":"10.1016/j.yebeh.2024.110040","url":null,"abstract":"<div><h3>Objectives</h3><div>To assess the knowledge and attitudes of Saudi physicians from different specialties towards Psychogenic Non-Epileptic Seizures (PNES) and identify the challenges faced in managing this condition.</div></div><div><h3>Methods</h3><div>In November 2023, a questionnaire was distributed online to physicians through official targeted medical specialties societies. In February 2024 the study was closed. The survey was conducted in English, including questions about socio-demographics, knowledge about PNES’s clinical presentation, diagnosis, management, respondents’ experience, confidence and challenges in handling PNES cases.</div></div><div><h3>Results</h3><div>A total of 222 responses were collected. The overall knowledge score was 34.51 ± 9.67 out of 60, with 64.9 % of participants demonstrating good knowledge (score ≥ 50 %) and 35.1 % showing poor knowledge (score &lt; 50 %). The overall attitude score was 21.65 ± 7.49 out of 40, with 55.4 % of participants demonstrating a favorable attitude towards PNES diagnosis &amp; management (score ≥ 50 %), while 44.6 % displayed an unfavorable attitude (score &lt; 50 %). Neurologists and psychiatrists exhibited higher knowledge and more positive attitudes compared to other specialties. Emergency physicians, internists, and pediatricians showed the lowest scores of knowledge &amp; attitudes. Significant challenges included a lack of knowledge (41.0 %), insufficient diagnostic resources (35.6 %), and poor cross-disciplinary collaboration (36.0 %).</div></div><div><h3>Significance</h3><div>There is a critical need for improved knowledge about PNES characteristics, management, and training resources to enhance physicians’ attitudes toward PNES patients, particularly among specialties that frequently encounter these patients. Addressing the identified gaps can lead to better patient outcomes through timely diagnosis and appropriate treatment referrals.</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":"142282328","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
Postoperative seizure outcomes and antiseizure medication utilization based on histopathological diagnosis: A retrospective cohort study 基于组织病理学诊断的术后癫痫发作结果和抗癫痫药物使用情况:一项回顾性队列研究。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110056

Objective

Analyze the association between histopathology, seizure outcomes, and drug load of antiseizure medications (ASMs) 5–8 years after epilepsy surgery to inform preoperative decision-making and consultation.

Methods

In this retrospective, non-interventional, single-center study, patients who visited the epilepsy clinic at West China Hospital, Sichuan University from Jan 1, 2015 to Dec 31, 2020 were assessed. Patients with postoperative histopathology after epilepsy resection were included and categorized into 13 etiological groups. The primary outcomes were achieving Engel class 1 at 1, 2, 3, 5, and 8 years postoperative. Secondary outcomes included the use of ASMs and comparison of postoperative seizure outcomes between adults and children. Univariate and multivariable analyses were conducted to explore the association between clinical characteristics such as histopathology and seizure outcomes.

Results

A total of 315 patients were include. Patients with embryonic dysplastic neuroepithelial tumor (DNT) achieved the best seizure outcomes (84.6 % Engel class 1). DNT (odds ratio, OR=0.103, 95 %CI=0.012–0.899), cavernous hemangiomas (OR=0.140, 95 %CI=0.024–0.819) and meningioma (OR=0.137, 95 %CI=0.021–0.910) were independently associated with a higher probability of seizure-free outcome. The results of epileptic seizures in adult and pediatric groups with different pathologies were significantly different, and the preoperative and postoperative ASM dosages were also different among adult patients with various etiologies. Additionally, multivariate analysis showed that early age at onset (adjusted hazard ratio (HR) = 1.754, 95 % CI=1.049–2.934, P=0.032), late surgical age (HR=0.569, 95 %CI=0.339–0.954, P=0.032), and longer duration from seizure onset to surgery (HR=1.735, 95 % CI=1.028–2.928, P=0.039) were independent predictors of unfavorable outcomes in epileptic seizures.

Conclusions

we demonstrated that the seizure outcomes of focal epilepsy have high pathological specificity, with histopathological diagnosis serving as a crucial and independent determinant of seizure outcome. Surgical assessment should be contemplated for all patients with presumed refractory focal epilepsy, irrespective of their age.
目的分析癫痫手术后5-8年组织病理学、癫痫发作结果和抗癫痫药物(ASMs)用药量之间的关联,为术前决策和咨询提供参考:在这项回顾性、非干预性、单中心研究中,对2015年1月1日至2020年12月31日期间在四川大学华西医院癫痫门诊就诊的患者进行了评估。研究纳入了癫痫切除术后组织病理学检查的患者,并将其分为13个病因组。主要结果为术后1年、2年、3年、5年和8年达到恩格尔1级。次要结果包括 ASM 的使用以及成人和儿童术后癫痫发作结果的比较。研究人员进行了单变量和多变量分析,以探讨组织病理学等临床特征与癫痫发作结果之间的关联:结果:共纳入 315 例患者。胚胎发育不良性神经上皮肿瘤(DNT)患者的癫痫发作预后最好(84.6%为恩格尔1级)。DNT(几率比,OR=0.103,95 %CI=0.012-0.899)、海绵状血管瘤(OR=0.140,95 %CI=0.024-0.819)和脑膜瘤(OR=0.137,95 %CI=0.021-0.910)与较高的无癫痫发作概率独立相关。不同病因的成人组和儿童组的癫痫发作结果有显著差异,不同病因的成人患者术前和术后的 ASM 剂量也不同。此外,多变量分析显示,发病年龄早(调整后危险比(HR)=1.754,95 % CI=1.049-2.934,P=0.032)、手术年龄晚(HR=0.569,95 %CI=0.339-0.954,P=0.032)、癫痫发作至手术时间长(HR=1.735,95 % CI=1.028-2.928,P=0.039)是癫痫发作不利结局的独立预测因素。结论:我们证明局灶性癫痫的发作结局具有高度病理特异性,组织病理学诊断是癫痫发作结局的关键和独立决定因素。所有假定为难治性局灶性癫痫的患者,无论年龄大小,都应考虑进行手术评估。
{"title":"Postoperative seizure outcomes and antiseizure medication utilization based on histopathological diagnosis: A retrospective cohort study","authors":"","doi":"10.1016/j.yebeh.2024.110056","DOIUrl":"10.1016/j.yebeh.2024.110056","url":null,"abstract":"<div><h3>Objective</h3><div>Analyze the association between histopathology, seizure outcomes, and drug load of antiseizure medications (ASMs) 5–8 years after epilepsy surgery to inform preoperative decision-making and consultation.</div></div><div><h3>Methods</h3><div>In this retrospective, non-interventional, single-center study, patients who visited the epilepsy clinic at West China Hospital, Sichuan University from Jan 1, 2015 to Dec 31, 2020 were assessed. Patients with postoperative histopathology after epilepsy resection were included and categorized into 13 etiological groups. The primary outcomes were achieving Engel class 1 at 1, 2, 3, 5, and 8 years postoperative. Secondary outcomes included the use of ASMs and comparison of postoperative seizure outcomes between adults and children. Univariate and multivariable analyses were conducted to explore the association between clinical characteristics such as histopathology and seizure outcomes.</div></div><div><h3>Results</h3><div>A total of 315 patients were include. Patients with embryonic dysplastic neuroepithelial tumor (DNT) achieved the best seizure outcomes (84.6 % Engel class 1). DNT (odds ratio, OR=0.103, 95 %CI=0.012–0.899), cavernous hemangiomas (OR=0.140, 95 %CI=0.024–0.819) and meningioma (OR=0.137, 95 %CI=0.021–0.910) were independently associated with a higher probability of seizure-free outcome. The results of epileptic seizures in adult and pediatric groups with different pathologies were significantly different, and the preoperative and postoperative ASM dosages were also different among adult patients with various etiologies. Additionally, multivariate analysis showed that early age at onset (adjusted hazard ratio (HR) = 1.754, 95 % CI=1.049–2.934, P=0.032), late surgical age (HR=0.569, 95 %CI=0.339–0.954, P=0.032), and longer duration from seizure onset to surgery (HR=1.735, 95 % CI=1.028–2.928, P=0.039) were independent predictors of unfavorable outcomes in epileptic seizures.</div></div><div><h3>Conclusions</h3><div>we demonstrated that the seizure outcomes of focal epilepsy have high pathological specificity, with histopathological diagnosis serving as a crucial and independent determinant of seizure outcome. Surgical assessment should be contemplated for all patients with presumed refractory focal epilepsy, irrespective of their age.</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":"142282325","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
Depression and stigma among a sample of Egyptian adolescents with epilepsy and their impact on antiseizure medications adherence 埃及青少年癫痫患者的抑郁和耻辱感及其对坚持服用抗癫痫药物的影响
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110031

Background

The lifetime prevalence of epilepsy varies between 3.5 and 10.7 per 1000 individuals in developed countries, and from 0.9 to 74.4 per 1000 individuals in Asia, sub-Saharan Africa, and Latin America. In adolescents, the prevalence of epilepsy is estimated to be 1.5 to 2%.

Purpose

The purpose of this study was to examine the clinical characteristics of adolescents with epilepsy (AWE) and highlight the differences between childhood-onset epilepsy and adolescent-onset epilepsy. Additionally, the study aimed to assess the level of self-stigma and depression, as well as their impact on adherence to antiseizure medication (ASMs).

Methods

This cross-sectional study was conducted at the Epilepsy Clinic at Kasr Al-Ainy Hospitals. Patients underwent a thorough evaluation of their seizure history, as well as completed the Adherence to Refills and Medications Scale (ARMS), Kilifi Stigma Scale for Epilepsy (KSSE), and Patient Health Questionnaire-9 (PHQ-9) to assess depression.

Results

A total of 136 AWE were included in the study, consisting of 82 males and 54 females with a median age of 15 and an interquartile range of 13–17. Most patients (54 %) had focal onset seizures, while the remaining 46 % had generalized onset seizures. Of the total sample, 87 (64 %) achieved seizure control for at least one year and are currently taking ASMs. However, only 60 % of the patients were found to be adherent to their ASMs. Fourteen patients (17.2 %) met the criteria for drug-resistant epilepsy. Interestingly, patients with adolescent-onset epilepsy were significantly more adherent to their ASMs compared to those with childhood-onset epilepsy (P=0.01). Additionally, the adherent group had significantly lower scores on KSSE and PHQ-9 compared to the non-adherent group (P=<0.0001 for each). Furthermore, there was a positive correlation between scores on the KSSE and PHQ-9 (P<0.001).

Conclusion

Depression and self-stigma are significant barriers to adherence among adolescents with epilepsy. These findings highlight the need to involve psychiatrists and epileptologists in epilepsy transition programs.

背景在发达国家,癫痫的终生患病率为每千人 3.5 至 10.7 例,而在亚洲、撒哈拉以南非洲和拉丁美洲,则为每千人 0.9 至 74.4 例。本研究的目的是检查青少年癫痫患者(AWE)的临床特征,并强调儿童期发病的癫痫与青少年期发病的癫痫之间的差异。此外,该研究还旨在评估自我污名化和抑郁的程度,以及它们对坚持服用抗癫痫药物(ASMs)的影响。患者接受了对其癫痫发作史的全面评估,并完成了 "坚持补药和服药量表"(ARMS)、"基利菲癫痫耻辱量表"(KSSE)和 "患者健康问卷-9"(PHQ-9)以评估抑郁情况。大多数患者(54%)为局灶性发作,其余46%为全身性发作。在所有样本中,有 87 人(64%)至少在一年内控制了癫痫发作,目前正在服用 ASMs。然而,只有 60% 的患者坚持服用 ASMs。14名患者(17.2%)符合耐药性癫痫的标准。有趣的是,与儿童期发病的癫痫患者相比,青少年期发病的癫痫患者对ASM的依从性明显更高(P=0.01)。此外,与非坚持治疗组相比,坚持治疗组的 KSSE 和 PHQ-9 分数明显较低(P=0.0001)。此外,KSSE 和 PHQ-9 的得分之间存在正相关(P<0.001)。这些发现凸显了让精神科医生和癫痫专家参与癫痫过渡计划的必要性。
{"title":"Depression and stigma among a sample of Egyptian adolescents with epilepsy and their impact on antiseizure medications adherence","authors":"","doi":"10.1016/j.yebeh.2024.110031","DOIUrl":"10.1016/j.yebeh.2024.110031","url":null,"abstract":"<div><h3>Background</h3><p>The lifetime prevalence of epilepsy varies between 3.5 and 10.7 per 1000 individuals in developed countries, and from 0.9 to 74.4 per 1000 individuals in Asia, sub-Saharan Africa, and Latin America. In adolescents, the prevalence of epilepsy is estimated to be 1.5 to 2%.</p></div><div><h3>Purpose</h3><p>The purpose of this study was to examine the clinical characteristics of adolescents with epilepsy (AWE) and highlight the differences between childhood-onset epilepsy and adolescent-onset epilepsy. Additionally, the study aimed to assess the level of self-stigma and depression, as well as their impact on adherence to antiseizure medication (ASMs).</p></div><div><h3>Methods</h3><p>This cross-sectional study was conducted at the Epilepsy Clinic at Kasr Al-Ainy Hospitals. Patients underwent a thorough evaluation of their seizure history, as well as completed the Adherence to Refills and Medications Scale (ARMS), Kilifi Stigma Scale for Epilepsy (KSSE), and Patient Health Questionnaire-9 (PHQ-9) to assess depression.</p></div><div><h3>Results</h3><p>A total of 136 AWE were included in the study, consisting of 82 males and 54 females with a median age of 15 and an interquartile range of 13–17. Most patients (54 %) had focal onset seizures, while the remaining 46 % had generalized onset seizures. Of the total sample, 87 (64 %) achieved seizure control for at least one year and are currently taking ASMs. However, only 60 % of the patients were found to be adherent to their ASMs. Fourteen patients (17.2 %) met the criteria for drug-resistant epilepsy. Interestingly, patients with adolescent-onset epilepsy were significantly more adherent to their ASMs compared to those with childhood-onset epilepsy (P=0.01). Additionally, the adherent group had significantly lower scores on KSSE and PHQ-9 compared to the non-adherent group (P=&lt;0.0001 for each). Furthermore, there was a positive correlation between scores on the KSSE and PHQ-9 (P&lt;0.001).</p></div><div><h3>Conclusion</h3><p>Depression and self-stigma are significant barriers to adherence among adolescents with epilepsy. These findings highlight the need to involve psychiatrists and epileptologists in epilepsy transition programs.</p></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":"142271772","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 seizure outcome and extent of neocortical resection on emotional well-being in patients with epilepsy one year after temporal lobe surgery 癫痫发作结果和新皮质切除范围对颞叶手术一年后癫痫患者情绪的影响。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-21 DOI: 10.1016/j.yebeh.2024.110061

Background

Seizure frequency and cognitive function are common parameters in assessing epilepsy surgery outcomes. However, psychobehavioral outcomes, such as symptoms of depression and quality of life (QOL), have not found equal attention yet.

Objective

To assess the effect of seizure frequency, the extent of resection, and cognitive function on the psychobehavioral outcome of patients after temporal lobe surgery for pharmacoresistant epilepsy.

Methods

We retrospectively reviewed all consecutive patients who underwent surgery for intractable temporal lobe epilepsy between 09/2015 and 07/2019. We examined seizure outcome, surgical plan, resection volume, cognitive functions, and psychobehavioral outcome.

Results

This study included 77 patients (31 males, 46 females) who underwent temporal lobe surgery. One year after surgery, 53 patients (68.8 %) were completely seizure-free (Engel IA) and 92.2 % of patients showed a worthwhile improvement in seizure frequency (Engel I-III). Resection volume was significantly negatively correlated with QOL (r =  − 0.284, p = 0.041). However, after controlling for the effect of seizure outcome, no significant correlation remained. Patients with a worthwhile improvement in seizure frequency showed significantly fewer symptoms of depression (p = 0.024) and a significantly higher QOL (p = 0.012) one year after surgery. The differences in symptoms of depression (p = 0.044) and QOL (p = 0.030) between patients with and without improvements in seizure frequency remained significant after controlling for the effect of resection volume. After procedures sparing the amygdala and hippocampus (neocortical resection), patients presented significantly fewer symptoms of depression (p = 0.044) and significantly better QOL (p = 0.008) than patients after procedures involving mesial-temporal structures, independent of the resection volume, and after controlling for the side of the procedure (dominant vs. non-dominant). After also controlling for seizure outcome, the difference remained for QOL (p = 0.014) but not for symptoms of depression.

Conclusions

A patient’s emotional well-being one year after surgery for pharmacoresistant temporal lobe epilepsy strongly depends on their seizure outcome. As an individual factor, the extent of neocortical resection negatively affects postsurgical emotional well-being, but a favorable seizure outcome outweighs this effect, independent of the resection volume. A favorable seizure outcome even outweighs the negative effects of procedures involving mesial-temporal structures on symptoms of depression.
背景:癫痫发作频率和认知功能是评估癫痫手术效果的常见参数。然而,抑郁症状和生活质量(QOL)等心理行为结果尚未得到同等关注:评估癫痫发作频率、切除范围和认知功能对药物耐药性癫痫颞叶手术后患者心理行为结果的影响:我们回顾性研究了2015年9月至2019年7月期间因难治性颞叶癫痫接受手术治疗的所有连续患者。我们研究了癫痫发作结果、手术方案、切除量、认知功能和心理行为结果:本研究纳入了77名接受颞叶手术的患者(31名男性,46名女性)。术后一年,53 名患者(68.8%)完全无癫痫发作(Engel IA),92.2%的患者癫痫发作频率有明显改善(Engel I-III)。切除体积与 QOL 呈明显负相关(r = - 0.284,p = 0.041)。然而,在控制了癫痫发作结果的影响后,两者之间不再存在明显的相关性。癫痫发作频率明显改善的患者在术后一年抑郁症状明显减少(p = 0.024),生活质量明显提高(p = 0.012)。在控制了切除量的影响后,癫痫发作频率有所改善和没有改善的患者在抑郁症状(p = 0.044)和生活质量(p = 0.030)方面的差异仍然显著。在保留杏仁核和海马(新皮质切除)的手术后,患者的抑郁症状(p = 0.044)和 QOL(p = 0.008)明显少于涉及颞中叶结构的手术后患者,这与切除体积无关,并且在控制了手术侧(优势侧与非优势侧)后也是如此。在控制了癫痫发作结果后,QOL(p = 0.014)方面的差异依然存在,但抑郁症状方面的差异则不存在:结论:药物耐药性颞叶癫痫患者术后一年的情绪健康状况在很大程度上取决于其发作结果。作为一个个体因素,新皮质切除的范围会对术后的情绪稳定产生负面影响,但良好的癫痫发作结果会超过这种影响,这与切除量无关。良好的癫痫发作结果甚至超过了涉及颞中叶结构的手术对抑郁症状的负面影响。
{"title":"Impact of seizure outcome and extent of neocortical resection on emotional well-being in patients with epilepsy one year after temporal lobe surgery","authors":"","doi":"10.1016/j.yebeh.2024.110061","DOIUrl":"10.1016/j.yebeh.2024.110061","url":null,"abstract":"<div><h3>Background</h3><div>Seizure frequency and cognitive function are common parameters in assessing epilepsy surgery outcomes. However, psychobehavioral outcomes, such as symptoms of depression and quality of life (QOL), have not found equal attention yet.</div></div><div><h3>Objective</h3><div>To assess the effect of seizure frequency, the extent of resection, and cognitive function on the psychobehavioral outcome of patients after temporal lobe surgery for pharmacoresistant epilepsy.</div></div><div><h3>Methods</h3><div>We retrospectively reviewed all consecutive patients who underwent surgery for intractable temporal lobe epilepsy between 09/2015 and 07/2019. We examined seizure outcome, surgical plan, resection volume, cognitive functions, and psychobehavioral outcome.</div></div><div><h3>Results</h3><div>This study included 77 patients (31 males, 46 females) who underwent temporal lobe surgery. One year after surgery, 53 patients (68.8 %) were completely seizure-free (Engel IA) and 92.2 % of patients showed a worthwhile improvement in seizure frequency (Engel I-III). Resection volume was significantly negatively correlated with QOL (<em>r</em> =  − 0.284, <em>p</em> = 0.041). However, after controlling for the effect of seizure outcome, no significant correlation remained. Patients with a worthwhile improvement in seizure frequency showed significantly fewer symptoms of depression (<em>p</em> = 0.024) and a significantly higher QOL (<em>p</em> = 0.012) one year after surgery. The differences in symptoms of depression (<em>p</em> = 0.044) and QOL (<em>p</em> = 0.030) between patients with and without improvements in seizure frequency remained significant after controlling for the effect of resection volume. After procedures sparing the amygdala and hippocampus (neocortical resection), patients presented significantly fewer symptoms of depression (<em>p</em> = 0.044) and significantly better QOL (<em>p</em> = 0.008) than patients after procedures involving mesial-temporal structures, independent of the resection volume, and after controlling for the side of the procedure (dominant vs. non-dominant). After also controlling for seizure outcome, the difference remained for QOL (<em>p</em> = 0.014) but not for symptoms of depression.</div></div><div><h3>Conclusions</h3><div>A patient’s emotional well-being one year after surgery for pharmacoresistant temporal lobe epilepsy strongly depends on their seizure outcome. As an individual factor, the extent of neocortical resection negatively affects postsurgical emotional well-being, but a favorable seizure outcome outweighs this effect, independent of the resection volume. A favorable seizure outcome even outweighs the negative effects of procedures involving mesial-temporal structures on symptoms of depression.</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/S1525505024004438/pdfft?md5=89c237b03c7b36f0e41575c87a13d767&pid=1-s2.0-S1525505024004438-main.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142282323","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
Transition from rectal to intranasal route among mostly pediatric patients with repeated prescriptions of rescue benzodiazepines for seizure emergencies 因癫痫发作紧急情况而反复开具苯并二氮杂卓抢救处方的大多数儿科患者从直肠途径转为鼻内途径治疗
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-20 DOI: 10.1016/j.yebeh.2024.110038

Objective

To describe the changes in Food and Drug Administration (FDA)-approved non-intravenous rescue benzodiazepine (non-IV-rBZD) use and cost after the introduction of intranasal midazolam and intranasal diazepam.

Methods

Retrospective descriptive study using the MarketScan Database between the years 2016 and 2022. We considered patients who had at least one non-IV-rBZD prescription before the introduction of intranasal rescue medications and at least one non-IV-rBZD prescription after the introduction of intranasal rescue medications.

Results

There were 4,444 patients (45.8 % female, median (p25-p75) age of 10.0 (5.0–15.0) years). 2,255 of 4,444 (50.7 %) patients switched from rectal diazepam to either intranasal midazolam (1,110 (25.0 %)) or intranasal diazepam (1,145 (25.8 %)) as their last non-IV-rBZD. The change from rectal to intranasal non-IV-rBZDs has been increasing over the years from 2019 to 2022. On multivariable analysis, having a non-IV-rBZD for epilepsy (rather than for other reasons including febrile seizures), the year of the last rescue medication, urban (non-rural) patient’s residence, and certain regions of the United States were the factors most strongly associated with a change from rectal diazepam to intranasal non-IV-rBZDs. After adjusting for inflation, the median (p25-p75) average wholesale price (AWP) of the last non-IV-rBZD was higher than that of the first non-IV-rBZD [702 (406–748) versus 417 (406–426), Wilcoxon signed rank test p < 0.0001)]. This difference was mainly driven by the patients who changed from rectal diazepam to intranasal non-IV-rBZD [748 (714–755) versus 417 (406–426), Wilcoxon signed rank test p < 0.0001)]. After adjusting for inflation, the median (p25-p75) patient cost of the last non-IV-rBZD was higher than that of the first non-IV-rBZD [16 (3–55) versus 12 (6–31), Wilcoxon signed rank test p < 0.0001)]. This difference was mainly driven by the patients who changed from rectal diazepam to intranasal non-IV-rBZD [41 (6–83) versus 12 (6–30), Wilcoxon signed rank test p < 0.0001)].

Conclusion

Approximately half of patients changed from rectal diazepam to intranasal midazolam or intranasal diazepam and that transition has been progressively increasing from the year 2019 to the year 2022. The inflation-adjusted AWP and patient cost increased, especially among those patients who changed from rectal to intranasal rescue medication.

目的 描述在引入鼻内咪达唑仑和鼻内地西泮后,美国食品和药物管理局(FDA)批准的非静脉注射抢救性苯二氮卓类药物(non-IV-rBZD)的使用和成本的变化。结果共有 4444 名患者(45.8% 为女性,中位数(p25-p75)年龄为 10.0(5.0-15.0)岁)。4,444 名患者中有 2,255 人(50.7%)从地西泮直肠给药改为咪达唑仑鼻内给药(1,110 人(25.0%))或地西泮鼻内给药(1,145 人(25.8%))作为最后一种非 IV-rBZD 给药。从 2019 年到 2022 年,从直肠使用到鼻内使用非 IV-rBZD 的人数逐年增加。在多变量分析中,因癫痫(而非其他原因,包括发热性癫痫发作)而使用非 IV-rBZD 药物、最后一次使用抢救药物的年份、城市(非农村)患者的居住地以及美国的某些地区是与直肠地西泮改为鼻内非 IV-rBZDs 最密切相关的因素。扣除通货膨胀因素后,最后一种非 IV-rBZD 的平均批发价格(AWP)中位数(p25-p75)高于第一种非 IV-rBZD [702 (406-748) 对 417 (406-426),Wilcoxon 符号秩检验 p < 0.0001]。这一差异主要由从直肠地西泮改为鼻内非 IV-rBZD 的患者造成 [748 (714-755) 对 417 (406-426),Wilcoxon 符号秩检验 p < 0.0001]。扣除通货膨胀因素后,最后一次使用非 IV-rBZD 的患者费用中位数(p25-p75)高于第一次使用非 IV-rBZD 的患者费用中位数[16(3-55)对 12(6-31),Wilcoxon 符号秩检验 p <0.0001]。这一差异主要是由从直肠地西泮改为鼻内非 IV-rBZD 的患者造成的 [41 (6-83) 对 12 (6-30),Wilcoxon 符号秩检验 p < 0.0001)]。结论约有一半的患者从直肠地西泮改为鼻内咪达唑仑或鼻内地西泮,从 2019 年到 2022 年,这一转变一直在逐步增加。经通胀调整后的AWP和患者费用有所增加,尤其是那些从直肠给药改为鼻内给药的患者。
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引用次数: 0
Novel approaches to measuring cognition in individuals with severe to profound functional impairment: A pilot study in SCN2A-related disorder 测量严重至极度功能障碍患者认知能力的新方法:SCN2A 相关障碍试点研究
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2024-09-20 DOI: 10.1016/j.yebeh.2024.109975

Valid clinical outcome assessments with the ability to capture meaningful aspects of neurodevelopment for individuals with neurogenetic conditions associated with profound functional impairments are lacking, yet critical for clinical care and clinical trial readiness. The purpose of this pilot study was to examine and compare the initial psychometric properties of a series of commonly used standardized and norm-referenced measures of cognition and adaptive functioning as well as alternative measures of neurobehavioral functioning designed to capture responsivity (i.e., alertness, awareness, responsivity to the environment) in those with acquired brain injuries in a sample of individuals with severe to profound functional impairment associated with a neurogenetic etiology. Ten individuals (median age = 7.5 years, IQR = 4.8–11.5, range 4–21; n = 8 male) with severe to profound functional impairment associated with SCN2A-Related Disorder and their parents were included in this study. Parents completed the Vineland Adaptive Behavior Scales, Third Edition Comprehensive Interview (Vineland-3) and the Developmental Profile, Fourth Edition Cognitive Scale (DP-4) and their children completed the Bayley Scales of Infant and Toddler Development Cognitive Scale (Bayley-4; given out of the standardized age-range) and two measures of responsivity, the Coma Recovery Scale, Pediatric and the Rappaport Coma/Near Coma Scale. Results demonstrated exceptionally low skills (median Vineland-3 Adaptive Behavior Composite = 35.5) and frequent floor effects across norm-referenced measures (i.e., Vineland-3, DP-4, Bayley-4); however, raw scores yielded more range and variability and no absolute floor effects. There were also no floor effects on measures of responsivity and findings suggest that these alternative tools may capture more variability in some aspects of neurobehavioral functioning that are critical to higher order cognitive functions, particularly for those with mental-ages below a 12 month-level. Initial evidence of construct validity of all measures in this population was shown. Findings support ongoing investigation of measures of responsivity and identified areas of potential measure modification that may improve applicability for individuals with severe to profound functional impairment associated with neurogenetic as opposed to acquired etiologies.

对于患有神经遗传性疾病并伴有严重功能障碍的患者,目前尚缺乏有效的临床结果评估,而这些结果评估能够捕捉到患者神经发育的重要方面,但这对于临床治疗和临床试验的准备工作至关重要。本试验性研究的目的是,在与神经遗传病因相关的重度至极重度功能障碍患者样本中,检查并比较一系列常用的标准化和常模参照认知和适应功能测试方法,以及其他神经行为功能测试方法的初步心理测量特性,这些方法旨在捕捉后天性脑损伤患者的反应能力(即警觉性、意识、对环境的反应能力)。本研究共纳入了 10 名患有 SCN2A 相关障碍的重度至极重度功能障碍患者及其父母(中位年龄 = 7.5 岁,IQR = 4.8-11.5 岁,4-21 岁之间;男性 = 8 人)。家长完成了维尼兰适应行为量表第三版综合访谈(Vineland-3)和发育概况第四版认知量表(DP-4),他们的孩子完成了贝利婴幼儿发育认知量表(Bayley-4;在标准化年龄范围之外)和两种反应能力测量,即昏迷恢复量表儿科版和拉帕波特昏迷/接近昏迷量表。结果表明,在常模参照测量(即 Vineland-3、DP-4、Bayley-4)中,技能特别低(Vineland-3 适应行为综合中位数 = 35.5),而且经常出现底限效应;但是,原始分数的范围和可变性更大,而且没有绝对的底限效应。研究结果表明,这些替代工具可以捕捉到对高阶认知功能至关重要的神经行为功能的某些方面的更多变异性,尤其是对那些智力年龄低于 12 个月的儿童而言。在这一人群中,所有测量方法的构建有效性都得到了初步证明。研究结果支持目前对反应性测量方法的调查,并确定了可能对测量方法进行修改的领域,这些修改可能会提高测量方法对因神经遗传而非后天病因导致的严重至极度功能障碍患者的适用性。
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引用次数: 0
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Epilepsy & Behavior
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