Epilepsy and Behavior Reports最新文献_第10页

Utility and safety of epilepsy monitoring unit in an inpatient psychiatric setting in Japan 日本精神科住院病人癫痫监测装置的效用和安全性

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2025-01-29 DOI: 10.1016/j.ebr.2025.100744

Go Taniguchi , Mao Fujioka , Yumiko Okamura , Minako Miyagi , Kenichi Yano , Shinsuke Kondo , Kiyoto Kasai

An epilepsy monitoring unit (EMU) with long-term video electroencephalographic monitoring (LTVEM) was launched in our psychiatric ward to facilitate close examination of patients with epilepsy and offer hospital experience to psychiatrists unfamiliar with epilepsy care in Japan. This study aimed to examine the usefulness and safety of the EMU in an inpatient psychiatric setting in Japan by retrospectively reviewing the clinical notes of EMU admission cases in the psychiatric ward of the University of Tokyo Hospital between August 2014 and March 2020. The usefulness of the EMU was evaluated in terms of 1) habitual seizure recordings, 2) change in diagnosis, 3) frequency of epileptic seizures, and 4) surgical cases after EMU admission, and 5) EMU safety. Habitual events were recorded during LTVEM in 69 % of patients. The diagnosis was changed post-EMU evaluation in 28 % of the patients admitted for differential diagnosis. Among 41 patients who received anti-seizure medications, seizure frequency improved in 22 (53 %), whereas 10 (24 %) became seizure-free, and seizures were reduced by >50 % in 12 (29 %). Eleven patients eventually underwent surgery for epilepsy. Among the total 134 patients, 13 (10 %) experienced adverse events during EMU stay and 6 experienced falls, but none required prolonged hospitalization. Furthermore, three patients had panic attacks, but no post-ictal psychiatric symptoms were observed. Admission to an EMU in the psychiatric setting can facilitate accurate diagnosis and improve epilepsy management. Fall prevention measures should be implemented during and after LTVEM for safer EMU evaluations.

我们在精神科病房设立了一个具有长期视频脑电图监测（LTVEM）的癫痫监测单元（EMU），以便对癫痫患者进行密切检查，并向不熟悉日本癫痫治疗的精神科医生提供医院经验。本研究旨在通过回顾性回顾2014年8月至2020年3月期间东京大学医院精神科病房的EMU入院病例的临床记录，检验EMU在日本精神科住院患者中的有效性和安全性。评估EMU的有效性包括：1)习惯性癫痫发作记录，2)诊断变化，3)癫痫发作频率，4)EMU入院后手术病例，5)EMU安全性。69%的患者在LTVEM期间记录了习惯性事件。在接受鉴别诊断的患者中，28%的患者在emu评估后诊断发生了改变。在41例接受抗癫痫药物治疗的患者中，22例（53%）患者癫痫发作频率有所改善，10例（24%）患者癫痫不再发作，12例（29%）患者癫痫发作减少50%。11名患者最终接受了癫痫手术。在134例患者中，13例（10%）在EMU住院期间出现不良事件，6例出现跌倒，但没有一例需要延长住院时间。此外，三名患者有惊恐发作，但没有观察到精神障碍后症状。在精神病院入住EMU可以促进准确诊断和改善癫痫管理。在LTVEM期间和之后应实施预防跌倒措施，以便更安全地进行动车组评估。

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引用次数: 0

Alice in Wonderland Syndrome: Localising insights from right visual cortex stroke complicated by epilepsia partialis continua 爱丽丝梦游仙境综合征：右视皮质中风并发部分连续性癫痫的定位见解

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2025-01-29 DOI: 10.1016/j.ebr.2025.100745

Gashirai K. Mbizvo , Viraj Bharambe , Brython Hywel , Shubhabrata Biswas , Andrew J. Larner

The Alice in Wonderland syndrome comprises visual and/or somaesthetic distortions, most often migrainous in origin. We present a case of Alice in Wonderland syndrome in association with a right posterior/visual cortex infarction with subsequent seizures including focal motor status (epilepsia partialis continua), the latter a hitherto unreported association. These pathophysiological changes were of right hemisphere origin, suggesting Alice in Wonderland syndrome, if present, might have localising value for seizure focus in the right hemisphere.

爱丽丝梦游仙境综合症包括视觉和/或躯体审美的扭曲，最常见的是偏头痛的起源。我们提出一例爱丽丝梦游仙境综合征与右侧后/视觉皮层梗死相关的病例，随后的癫痫发作包括局灶性运动状态（持续部分性癫痫），后者迄今尚未报道的关联。这些病理生理变化源于右半球，提示如果出现爱丽丝梦游仙境综合征，可能对癫痫发作的病灶定位在右半球有价值。

引用次数: 0

Effect of deep brain stimulation on the severity of seizures and the quality of life in patients with multifocal drug-resistant epilepsy in Iran: A pilot review of local experience 脑深部刺激对伊朗多灶性耐药癫痫患者癫痫发作严重程度和生活质量的影响：对当地经验的试点审查

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2025-01-19 DOI: 10.1016/j.ebr.2025.100742

Amir Reza Bahadori , Parisa Javadnia , Afshan Davari , Sajad Shafiee , Sara Ranji , Mehrdad Sheikhvatan , Abbas Tafakhori

This study investigates the impact of the anterior nucleus of the thalamus deep brain stimulation (ANT-DBS) on patients with drug-resistant epilepsy (DRE) in Iran, specifically focusing on its effects on seizure metrics, severity and its influence on quality of life over time. A cohort of eight patients with DRE in Iran who underwent ANT-DBS was evaluated. Pre-operative assessments included comprehensive documentation of seizure frequency, duration, severity scores, and the Quality of Life in Epilepsy Inventory (QOLIE-13). Each patient also underwent high-resolution imaging using a 1.5 Tesla MRI, with targeted electrode placement in the anterior thalamic area. Post-operative evaluations measured changes in seizure frequency, severity scores, duration, and quality of life indicators. All subjects presented with DRE, and the mean age of participants was 24.62 years. Post-operative data revealed significantly reduced seizure frequency, duration, and severity scores. Notably, this reduction was more pronounced at the 6-month follow-up than the 3-month assessment, indicating a progressive therapeutic effect. All patients demonstrated a response to ANT-DBS, with two individuals achieving seizure freedom. Additionally, there was a marked improvement in quality of life, particularly in the domains of energy/fatigue and social functioning. ANT-DBS has been established as a promising and safe therapeutic intervention for patients with DRE. In a cohort of DRE patients in Iran, the treatment demonstrated comparable efficacy in decreasing seizure frequency and severity and enhancing self-reported quality of life, consistent with findings reported in the existing literature. The therapeutic benefits of ANT-DBS appear to augment over time.

本研究调查了伊朗丘脑前核深部脑刺激（ANT-DBS）对耐药癫痫（DRE）患者的影响，特别关注其对癫痫发作指标、严重程度及其对长期生活质量的影响。对伊朗8名接受ANT-DBS治疗的DRE患者进行了评估。术前评估包括癫痫发作频率、持续时间、严重程度评分和癫痫量表（QOLIE-13）中的生活质量的综合记录。每位患者还接受了1.5特斯拉核磁共振成像的高分辨率成像，并在丘脑前部放置了靶向电极。术后评估测量癫痫发作频率、严重程度评分、持续时间和生活质量指标的变化。所有受试者均接受DRE检查，平均年龄24.62岁。术后数据显示癫痫发作频率、持续时间和严重程度评分显著降低。值得注意的是，在6个月的随访中，这种减少比3个月的评估更明显，表明治疗效果是渐进式的。所有患者对抗- dbs均有反应，其中两名患者实现了癫痫发作自由。此外，生活质量有了显著改善，特别是在精力/疲劳和社会功能方面。ANT-DBS已被确定为DRE患者的一种有前景且安全的治疗干预措施。在伊朗的一组DRE患者中，该治疗在降低癫痫发作频率和严重程度以及提高自我报告的生活质量方面显示出相当的疗效，与现有文献报道的结果一致。抗- dbs的治疗效果似乎随着时间的推移而增强。

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引用次数: 0

The use of newer anti-seizure medicines in women with epilepsy in pregnancy: A case series 妊娠期癫痫妇女使用新型抗癫痫药物：一个病例系列

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2025-01-15 DOI: 10.1016/j.ebr.2025.100741

Joan E. Devin , Fergal O’Shaughnessy , Muskan Sardana , Brian J. Cleary , Jennifer C. Donnelly , Nicola Maher

Epilepsy is a common serious neurological disorder, affecting approximately 28 per 10,000 pregnancies internationally each year. There are limited data on the use of newer anti-seizure medicines (ASMs) in pregnancy, despite increasing use. We aimed to describe the use of newer ASMs in women with epilepsy (WWE) attending the Rotunda Hospital, Dublin, in pregnancy, between 2018 and 2023. We conducted a retrospective case series using electronic health record data. All WWE with a medication order for a newer ASM and a completed pregnancy were included. We identified 34 pregnancies exposed to newer ASMs, namely zonisamide (35.2 %), brivaracetam (23.5 %), eslicarbazepine (23.5 %), lacosamide (17.6 %), and perampanel (2.9 %). Newer ASMs were used as monotherapy in 58.8 % cases. Levetiracetam was the most commonly prescribed concomitant ASM in polytherapy regimens (32.4 %). Seizures occurred during pregnancy or the postpartum period in 50.0 % and 14.7 % of pregnancies, respectively. Twenty-eight pregnancies (80 %) resulted in a livebirth, with median gestation and birth weight of 39 weeks’ [IQR 2] and 3100 g [IQR 790]. One neonate exposed to polytherapy including eslicarbazepine was observed to have a minor anomaly at birth, not requiring follow-up. Findings show that in WWE, most pregnancies exposed to newer ASMs resulted in healthy livebirths at term without negative outcomes. A high proportion of polytherapy exposures and high rate of seizures during pregnancy suggests that this may be a cohort at greater risk for caesarean section or other complications. Findings should be interpreted with caution, with additional data needed to examine the impact of individual ASMs on outcomes.

癫痫是一种常见的严重神经系统疾病，每年在国际上每10,000名孕妇中约有28人受其影响。妊娠期使用新型抗癫痫药物（asm）的数据有限，尽管使用越来越多。我们的目的是描述2018年至2023年期间在都柏林圆形医院就诊的妊娠期癫痫患者（WWE）使用新asm的情况。我们使用电子健康记录数据进行了回顾性病例系列研究。所有的WWE与药物订单为新的ASM和完成妊娠包括在内。我们确定了34例妊娠暴露于较新的ams，即唑尼沙胺（35.2%），布瓦西坦（23.5%），埃斯卡巴西平（23.5%），拉科沙胺（17.6%）和perampanel（2.9%）。58.8%的病例使用较新的asm作为单一疗法。在综合治疗方案中，左乙拉西坦是最常伴随ASM的处方（32.4%）。癫痫发作发生在孕期和产后的比例分别为50.0%和14.7%。28例妊娠（80%）导致活产，中位妊娠期和出生体重为39周[IQR 2]和3100 g [IQR 790]。一名接受包括埃斯卡巴西平在内的多种治疗的新生儿在出生时观察到轻微异常，不需要随访。研究结果表明，在WWE中，大多数暴露于较新的asm的妊娠导致健康的足月活产，没有负面结果。多种治疗暴露的高比例和怀孕期间癫痫发作的高比例表明，这可能是一个剖腹产或其他并发症风险更高的队列。研究结果应谨慎解释，需要更多的数据来检验个体asm对结果的影响。

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引用次数: 0

ADHD in Adults with Epilepsy: A Guide for Neurologists 成人癫痫患者的ADHD：神经科医生指南

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2024-12-28 DOI: 10.1016/j.ebr.2024.100739

Luciana Giambarberi , Halley B. Alexander , Heidi Munger Clary

Attention-deficit/hyperactivity disorder (ADHD) and epilepsy have one of the lesser known and yet highly debated relationships in neuropsychiatry. Similar to anxiety and depression, ADHD has a bidirectional relationship with epilepsy, in which individuals with epilepsy are more likely than the general population to have ADHD and vice versa. Most importantly, an untreated psychiatric condition can affect quality of life. Although the management of ADHD in PWE has been debated due to perceived seizure risk related to ADHD medications, a consensus has developed based on early pediatric studies that support the treatment of ADHD. However, the management of adults with ADHD, particularly in PWE, remains relatively unexplored. This critical gap in knowledge will be addressed using an illustrative case study followed by practical tips on the identification and pharmacologic management of ADHD in adults with epilepsy. The management of ADHD in PWE should begin with a thorough history, medication assessment for cognitive risk, and the addition of a brief ADHD screening tool, such as the Adult ADHD Self-Report Scale (ASRS). Treatment with stimulants, such as methylphenidate, and non-stimulants, such as atomoxetine, are effective. Caution, however, should be taken for any patients with history of bipolar disorder, as some ADHD medications may exacerbate symptoms of other psychiatric conditions. Patients can also be referred to psychotherapy, such as cognitive behavior therapy (CBT) for ADHD, in addition to or in lieu of medications, thus further minimizing potential pharmacological risk. Patients who have tried and failed multiple ADHD medications and/or who carry a more complex psychiatric history should be referred to a psychiatrist.

在神经精神病学中，注意力缺陷/多动障碍（ADHD）和癫痫之间的关系鲜为人知，但却备受争议。与焦虑和抑郁类似，多动症与癫痫有双向关系，癫痫患者比一般人群更容易患多动症，反之亦然。最重要的是，未经治疗的精神疾病会影响生活质量。尽管PWE患者的ADHD管理一直存在争议，因为人们认为ADHD药物与癫痫发作风险有关，但基于早期儿科研究，支持ADHD治疗的共识已经形成。然而，成人ADHD的管理，特别是PWE，仍然相对未被探索。这一关键的知识差距将通过一个说明性的案例研究来解决，随后是关于成人癫痫患者ADHD的识别和药物管理的实用技巧。PWE患者ADHD的管理应该从全面的病史、认知风险的药物评估和简短的ADHD筛查工具（如成人ADHD自我报告量表（ASRS））开始。用兴奋剂，如哌醋甲酯和非兴奋剂，如阿托西汀治疗是有效的。然而，对于任何有双相情感障碍病史的患者，应该谨慎对待，因为一些ADHD药物可能会加重其他精神疾病的症状。患者也可以接受心理治疗，如多动症的认知行为疗法（CBT），除了或代替药物治疗，从而进一步减少潜在的药理学风险。尝试过多种ADHD药物治疗但失败的患者和/或有更复杂精神病史的患者应该去看精神科医生。

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引用次数: 0

Hippocampal gene expression changes associated with sequential behavioral training in a temporal lobe epilepsy rat model 颞叶癫痫大鼠模型海马基因表达变化与顺序行为训练相关。

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2024-12-28 DOI: 10.1016/j.ebr.2024.100735

Rudhab Bahabry, Silvienne Sint Jago, Rebecca M. Hauser, Jonathan Harmon, Leah Dinah Sheppard, Bellafaith Oyassan, Farah D. Lubin

The transcriptional mechanisms underlying impaired hippocampal-dependent memory seen in temporal lobe epilepsy (TLE) have been extensively studied in rodent models. While cognitive testing in these models often involves multiple behavioral tasks, the impact of sequential behavioral testing (SBT) on gene transcription changes in epilepsy remains poorly understood. This study utilized the Kainic Acid (KA) TLE rodent model to examine hippocampal gene expression changes influenced by SBT. Our findings indicate reduced anxiety-related behavior, along with impaired spatial and recognition memory and fear memory in epileptic animals. Quantitative PCR (qPCR) analysis revealed an increase in BDNF, dFosB, Tet2, and Tet3 expression in the epilepsy-SBT group compared to control-SBT, while there was a reduction in Npas4 and Egr4 expression. Immunohistochemistry (IHC) showed that in epileptic animals, performing SBT reversed the loss of 5-hydroxymethylcytosine (5-hmC) in the dorsal hippocampus compared to that seen in home-caged (HC) epileptic animals, and this reversal was neuron-driven. These findings highlight the complex interplay between gene transcription and epigenetic regulation during SBT enrichment in the context of epilepsy.

颞叶癫痫（TLE）海马依赖记忆受损的转录机制已经在啮齿动物模型中得到了广泛的研究。虽然这些模型中的认知测试通常涉及多个行为任务，但顺序行为测试（SBT）对癫痫基因转录变化的影响仍然知之甚少。本研究采用Kainic Acid (KA) TLE啮齿动物模型，检测SBT对海马基因表达的影响。我们的研究结果表明，癫痫动物的焦虑相关行为减少，空间和识别记忆以及恐惧记忆受损。定量PCR （qPCR）分析显示，与对照组相比，癫痫- sbt组BDNF、dFosB、Tet2和Tet3表达增加，而Npas4和Egr4表达减少。免疫组织化学（IHC）显示，在癫痫动物中，与家养（HC）癫痫动物相比，SBT逆转了海马背侧5-羟甲基胞嘧啶（5-hmC）的丢失，这种逆转是神经元驱动的。这些发现强调了癫痫背景下SBT富集过程中基因转录和表观遗传调控之间复杂的相互作用。

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引用次数: 0

Favorable response to ketogenic diet therapy in a patient with DYNC1H1-related epilepsy 1例dync1h1相关癫痫患者对生酮饮食治疗反应良好。

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2024-12-26 DOI: 10.1016/j.ebr.2024.100740

Chalongchai Phitsanuwong , Stephanie Schimpf , Sho T. Yano

Dynein Cytoplasmic 1 Heavy chain 1 (DYNC1H1)-related disorders are a spectrum of conditions including neurodevelopmental disorders, congenital brain malformations, and neuromuscular diseases. These clinical features may co-occur, with four main disease entities including epilepsy with developmental epileptic encephalopathy such as infantile epileptic spasms syndrome (IESS) and Lennox-Gastaut syndrome (LGS), axonal Charcot-Marie-Tooth disease type 2O, spinal muscular atrophy with lower extremity-predominance (SMALED), and congenital cortical malformations. Epilepsy associated with this disorder often becomes drug-resistant and requires multiple medications and, in some cases, non-pharmacological treatments. To date, there is no specific epilepsy treatment that is particularly effective in this disorder. We report our experience in a case of a 3-year-old girl with a pathogenic variant in DYNC1H1 who presented with a developmental epileptic encephalopathy consistent with IESS and achieved seizure freedom on classic ketogenic diet (KD) after failing Adrenocorticotropic Hormone (ACTH), vigabatrin, and clobazam. The patient remained seizure free for more than 2 years on dietary monotherapy and had reported improvement in alertness, cognitive ability, muscle tone, and a normalized EEG. The ketogenic diet therapy, therefore, has shown to be highly effective in this case with DYNC1H1-related epilepsy.

动力蛋白-细胞质1重链1 （DYNC1H1）相关疾病是一系列疾病，包括神经发育障碍、先天性脑畸形和神经肌肉疾病。这些临床特征可能与四种主要疾病实体同时发生，包括癫痫伴发展性癫痫性脑病，如婴儿癫痫性痉挛综合征（IESS）和lenox - gastaut综合征（LGS），轴索性charco - marie - tooth病20型，脊髓性肌萎缩伴下肢优势（SMALED）和先天性皮质畸形。与这种疾病相关的癫痫往往具有耐药性，需要多种药物治疗，在某些情况下还需要非药物治疗。迄今为止，还没有针对这种疾病特别有效的特定癫痫治疗方法。我们报告了一例3岁女孩DYNC1H1致病变异，她表现为与IESS一致的发育性癫痫性脑病，在促肾上腺皮质激素（ACTH）、维加巴林和氯巴唑无效后，通过经典生酮饮食（KD）实现了癫痫发作自由。患者接受单一饮食治疗2年多无癫痫发作，并报告警觉性、认知能力、肌肉张力和正常脑电图均有改善。因此，生酮饮食疗法在本例dync1h1相关癫痫中显示出高度有效。

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引用次数: 0

Management recommendations to reduce cardiac risk in chronic epilepsy 降低慢性癫痫患者心脏风险的管理建议

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2024-12-25 DOI: 10.1016/j.ebr.2024.100738

Trudy D. Pang , Richard L. Verrier , Steven C. Schachter

Multifactorial lines of evidence in adults point to a critical linkage between chronic epilepsy and elevated risk for cardiovascular disease and premature cardiac death. Diverse pathophysiological processes appear to be involved that include accelerated atherosclerosis, myocardial infarction, abnormal autonomic tone, heart failure, atrial and ventricular arrhythmias, and hyperlipidemia. Seizure-induced surges in catecholamines and hypoxia may be conducive to cardiovascular damage and the Epileptic Heart condition. The current review provides a systematic strategy for clinical management to reduce risk for cardiovascular disease in adult patients with epilepsy. The proposed approach includes adherence to cardiovascular risk guidelines, incorporation of standard monitoring using electrocardiographic and echocardiographic markers, and regular assessment of plasma lipid profiles. Attention is drawn to the arrhythmogenic risks associated with antiseizure medications (ASMs) with sodium channel blocking properties that can disrupt cardiac conduction and repolarization and predispose to ventricular and atrial arrhythmias. Caution is warranted regarding the use of enzyme-inducing ASMs that can increase plasma lipid levels. The ultimate goals of the proposed management recommendations are to mitigate cardiac risk and reduce premature cardiac death in individuals with chronic epilepsy.

成人的多因素证据表明，慢性癫痫与心血管疾病和心脏性过早死亡风险升高之间存在关键联系。多种病理生理过程参与其中，包括动脉粥样硬化加速、心肌梗死、自主神经张力异常、心力衰竭、心房和室性心律失常以及高脂血症。癫痫引起的儿茶酚胺激增和缺氧可能有利于心血管损伤和癫痫性心脏病。目前的综述为临床管理提供了一个系统的策略，以降低成人癫痫患者心血管疾病的风险。建议的方法包括遵守心血管风险指南，结合心电图和超声心动图标记物的标准监测，以及定期评估血浆脂质谱。引起注意的是与钠通道阻断特性的抗癫痫药物（asm）相关的致心律失常风险，这些药物可破坏心脏传导和复极，易导致室性和心房性心律失常。谨慎使用可增加血脂水平的酶诱导asm。提出的管理建议的最终目标是减轻慢性癫痫患者的心脏风险和减少心脏性过早死亡。

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引用次数: 0

Caregiver burden associated with caring for individuals with tuberous sclerosis complex-associated seizures: A descriptive, non-interventional survey in Sweden 照顾者负担与照顾结节性硬化症相关癫痫患者相关：瑞典的一项描述性、非干预性调查。

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2024-12-22 DOI: 10.1016/j.ebr.2024.100737

Siu Hing Lo , Hanna Skrobanski , Miranda Harrison , Jamshaed Siddiqui , Sally Bowditch

Tuberous sclerosis complex (TSC)-associated seizures result in a significant burden for caregivers. To quantify time spent and describe activities undertaken by caregivers of individuals with TSC-associated seizures in Sweden, primary caregivers participated in a cross-sectional, non-interventional online survey. Questions comprised patient/caregiver characteristics, care provision, time, and activities associated with generalized seizures or non-seizure-related care. Twenty-three primary caregivers participated; 96 % parents, 100 % female. Median number of caregivers per individual was three. In the last month, median (interquartile range [IQR]) hours for caregiving per week was 52.0 (25.7–100.0; n = 21); median (IQR) hours for non-seizure-related care was 46.7 (20.0–93.3; n = 21) and for generalized seizure-related care was 4.7 (1.7–15.8; n = 12). Beyond the last month, hours/week of generalized seizure-related care varied from 1.9 (0–8.8) to 14.0 (0.5–77.0). Professional/paid carers contributed 99.2 (73.5–127.5) hours/week of care. Non-seizure-related care activities included assisting with routine medical care (n = 22, 96 %) and daily activities (n = 22, 96 %). Activities relating to generalized seizures included assessing the need for (n = 16, 84 %) and giving (n = 17, 89 %) rescue medication, providing physical support (n = 16, 84 %), and clearing the individual’s environment during generalized seizures (n = 13, 68 %). During generalized seizure recovery, activities included taking the individual to bed (n = 18, 95 %), emotional support (n = 14, 74 %), and managing behavioral issues (n = 14, 74 %). In Sweden, despite contributions of paid caregivers, individuals with TSC-associated seizures require substantial time from unpaid primary caregivers, including seizure- and non-seizure-related care. Generalized seizures have a considerable impact on time spent caregiving and the care activities undertaken.

结节性硬化症（TSC）相关的癫痫发作对护理人员造成重大负担。为了量化瑞典tsc相关癫痫患者的护理人员所花费的时间并描述其所从事的活动，主要护理人员参与了一项横断面、非介入性在线调查。问题包括患者/护理人员的特征、护理提供、时间和与全身性癫痫发作或非癫痫相关护理相关的活动。23名主要护理人员参与；96%是父母，100%是女性。每个人照顾者的中位数是三个。上个月，每周护理时间的中位数（四分位数间距[IQR]）为52.0小时(25.7-100.0；n = 21)；非癫痫相关护理的中位数（IQR）小时为46.7 (20.0-93.3；N = 21)，而与癫痫相关的全面护理为4.7 (1.7-15.8；n = 12)。在过去一个月之后，与癫痫相关的全面性护理小时数/周从1.9（0-8.8）到14.0（0.5-77.0）不等。专业/付费护理人员每周提供99.2（73.5-127.5）小时的护理。非癫痫相关护理活动包括协助常规医疗护理（n = 22,96 %）和日常活动（n = 22,96 %）。与全身性癫痫发作相关的活动包括评估（n = 16, 84%）和给予（n = 17, 89%）抢救药物的需要，提供身体支持（n = 16, 84%），以及在全身性癫痫发作期间清理个体环境（n = 13, 68%）。在癫痫全面恢复期间，活动包括将患者带到床上（n = 18, 95%）、情感支持（n = 14, 74%）和管理行为问题（n = 14, 74%）。在瑞典，尽管有偿护理人员做出了贡献，但与tsc相关的癫痫发作患者需要从无偿的初级护理人员那里获得大量时间，包括癫痫发作和非癫痫发作相关的护理。全身性癫痫发作对护理时间和护理活动有相当大的影响。

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引用次数: 0

Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina 照顾者负担和医疗保健提供者对癫痫的看法：中国大陆、台湾和阿根廷的一项观察性研究

IF 1.8 Q3 CLINICAL NEUROLOGY

Epilepsy and Behavior Reports

Pub Date : 2024-12-22 DOI: 10.1016/j.ebr.2024.100736

Ioannis Karakis , Santiago Flesler , Sanman Ghorpade , Rio Carla Pineda , Kalpesh Joshi , James Cooper , Shilpa Patkar , Andrea Schulz , Savita Bakhshi Anand , Nicola Barnes

Caregivers are important stakeholders in epilepsy management, and effective communication between healthcare providers (HCPs) and caregivers is needed to optimize patient well-being. The study aimed to identify and evaluate the burden of epilepsy care across the age spectrum from the caregiver’s perspective and understand the perception and management of caregiver burden, including drivers of decision-making in clinical practice, by HCPs. This was a cross-sectional survey of unpaid caregivers of persons with epilepsy (PWE) and HCPs treating PWE. A total of 200 caregivers (China and Taiwan: n = 65/200, 32.5 % each; Argentina: n = 70/200, 35.0 %), and 200 HCPs (China and Taiwan: n = 70/200, 35.0 % each; Argentina: n = 60/200, 30.0 %) participated. Caregivers commonly experienced emotional impacts including anxiety (58.5 %), depression (45.5 %), work/school productivity loss (40.0 %), reduced working hours (40.0 %), or financial stress (24.5 %). HCPs identified several challenges faced by caregivers care, such as fatigue (85.0 %), poor-quality sleep (68.0 %), emotional impacts and stress (61.5 % each), anxiety (57.0 %), and worry about the patient’s future prospects (54.0 %) (e.g., health status (56.5 %), loss of work productivity/career opportunities (50.5 %), worsening of the condition (47.0 %), seizure frequency (46.0 %), and impact on quality of life (46.0 %)). Caregivers for PWE reported emotional, work-related, physical, financial, and social impacts. HCPs recognized similar findings and alignment with the caregiving burden. This study identifies gaps in caregiver support and can be a basis for future initiatives to improve the needs of caregivers and gaps in family-HCP communication so that they can partner with HCPs in the care of PWE.

护理人员是癫痫管理的重要利益相关者，医疗保健提供者（HCPs）和护理人员之间需要有效沟通，以优化患者的福祉。该研究旨在从照顾者的角度确定和评估各年龄段的癫痫护理负担，并了解医护人员对照顾者负担的感知和管理，包括临床实践中决策的驱动因素。这是一项对癫痫患者（PWE）的无报酬照顾者和治疗PWE的HCPs的横断面调查。阿根廷：n = 60/200, 30.0%)参与。照顾者通常会经历情绪影响，包括焦虑（58.5%）、抑郁（45.5%）、工作/学校生产力下降（40.0%）、工作时间减少（40.0%）或经济压力（24.5%）。HCPs确定了护理人员护理面临的几个挑战，如疲劳（85.0%）、睡眠质量差（68.0%）、情绪影响和压力（各61.5%）、焦虑（57.0%）和对患者未来前景的担忧（54.0%）（例如，健康状况（56.5%）、丧失工作效率/职业机会（50.5%）、病情恶化（47.0%）、癫痫发作频率（46.0%）和对生活质量的影响（46.0%））。PWE的照顾者报告了情绪、工作、身体、财务和社会影响。卫生保健提供者认识到类似的发现，并与护理负担保持一致。本研究确定了护理人员支持方面的差距，可以作为未来倡议的基础，以改善护理人员的需求和家庭- hcp沟通方面的差距，以便他们能够与hcp合作照顾PWE。

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