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Development of a rapid screener to elicit patient preferences for antiseizure medication discontinuation 开发一种快速筛选器,以引出患者对停药的偏好。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2025-02-01 DOI: 10.1016/j.yebeh.2024.110240
Samuel W. Terman , Jordan M. Silva , Max Kuster , Jasper Lee , Amanda Brand , Kara Manuel , Navya Kalia , Micaela Dugan , Marla Reid , Katherine Mortati , Alexandra Tolmasov , Palak S. Patel , James F. Burke , Arthur C. Grant , Susanna S. O’Kula , Chloe E. Hill

Objective

While guidelines encourage individualized discussions of the risks and benefits of antiseizure medication (ASM) withdrawal after a period of seizure-freedom, no formal methods exist for assessing patient preferences. We report the initial development of a rapid patient preferences screener.

Methods

We conducted a mixed-methods study of adults who were ≥1 year seizure-free and seen for epilepsy across three institutions. We reviewed existing questionnaires and adapted three questions measuring core constructs influencing ASM decisions – views about ASMs, driving restrictions, and seizures. We added one additional “global” question, for 4 total questions. Participants rated question clarity and utility from 1 (low) to 7 (high).

Results

Of 32 participants, the median patient age was 46 (interquartile range [IQR] 33–56), with a median 3 years since their last seizure (IQR 2–11). Median responses were: 2 (IQR 1–5) for being bothered by ASMs, 2 (IQR 1–6) for feeling that a driving restriction would be disruptive, and 5 (IQR 4–7) for feeling that another seizure would be serious. Respondents tended to disagree that ASMs are doing more harm than good (median 1, IQR 1–2). Participants rated question clarity (median 6, IQR 6–7) and utility (median 7, IQR 6–7) highly.

Conclusions

We report the initial development of a pre-visit rapid screener of patient preferences pertinent to ASM withdrawal in well-controlled epilepsy. Patients endorsed the utility of such a screener and provided guidance to improve items. We hope that this work will ultimately improve shared decision-making.
目的:虽然指南鼓励个体化讨论抗癫痫药物(ASM)在一段时间无发作后停药的风险和益处,但没有正式的方法来评估患者的偏好。我们报告了快速患者偏好筛选器的初步发展。方法:我们进行了一项混合方法研究,研究对象是在三家机构中无癫痫发作≥1年的成人。我们回顾了现有的调查问卷,并改编了三个衡量影响ASM决策的核心结构的问题——对ASM的看法、驾驶限制和癫痫发作。我们增加了一个额外的“全局”问题,总共有4个问题。参与者将问题的清晰度和实用性从1(低)到7(高)打分。结果:在32名参与者中,患者年龄中位数为46岁(四分位数范围[IQR] 33-56),距最后一次癫痫发作的中位数为3年(IQR 2-11)。中位反应为:2 (IQR 1-5)表示被asm困扰,2 (IQR 1-6)表示感觉驾驶限制会造成干扰,5 (IQR 4-7)表示感觉再次发作会很严重。受访者倾向于不同意asm弊大于利(中位数1,IQR 1-2)。参与者高度评价问题的清晰度(中位数为6,IQR 6-7)和实用性(中位数为7,IQR 6-7)。结论:我们报告了一种与控制良好的癫痫患者ASM戒断相关的患者偏好的会诊前快速筛查的初步发展。患者认可这种筛选器的实用性,并提供改进项目的指导。我们希望这项工作最终能改善共同决策。
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引用次数: 0
Accelerometer-measured physical activity patterns in daily life and their association with factors of sedentary behavior in people with epilepsy 加速计测量癫痫患者日常生活中的身体活动模式及其与久坐行为因素的关系。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2025-02-01 DOI: 10.1016/j.yebeh.2024.110198
Burcin Aktar , Birgul Balci , Hatice Eraslan Boz , Sevgi Ferik Ozalan , Ibrahim Oztura , Baris Baklan

Objectives

Being physically active is important, but people with epilepsy (PWE) tend to have a sedentary lifestyle. There is limited evidence about physical activity patterns in PWE using objective measures. The aims of this study were: (1) to examine the physical activity patterns of PWE, (2) compare activity patterns between PWE in terms of drug-resistant epilepsy and medically controlled epilepsy with age- and sex-matched healthy controls; and (3) explore the association between physical activity patterns and body function and structure, activity and participation, and quality of life of PWE.

Methods

Seventy-three PWE and 74 healthy controls were enrolled. Physical activity data were collected prospectively over a 7-day period using a SenseWear Arm Band. Body function and structure in PWE were evaluated using the Fatigue Severity Scale, 30-second Chair Stand (30CST), Biodex-Fall Risk, Generalized Anxiety Disorder, Beck Depression Inventory, Pittsburg Sleep Quality Index, and Montreal Cognitive Assessment (MoCA). Activity and participation in PWE were measured using Activities-specific Balance Confidence, Timed Up and Go Test, Six-Minute Walk Test, and Tinetti-Balance and Tinetti-Gait. The quality of life of PWE was evaluated using the Quality of Life in Epilepsy Inventory-31.

Results

PWE took fewer steps per day and were sedentary for more time compared with healthy controls (7826 vs. 10,564 steps, P = 0.01; 534 min/day vs. 463 min/day, P < 0.001), especially PWE with drug-resistant epilepsy. 30CST, MoCA, and Biodex-Fall Risk were associated with sedentary behavior, with Biodex-Fall Risk explaining 7.2 % of the variance.

Conclusions

PWE demonstrated lower physical activity levels compared with healthy individuals, especially those with drug-resistant epilepsy. Our study highlights the need to tailor strategies including postural stability exercises for the enhancement of physical activity levels in PWE.
目的:积极参加体育锻炼非常重要,但癫痫患者(PWE)的生活方式往往久坐不动。利用客观测量方法了解癫痫患者体育锻炼模式的证据有限。本研究的目的是(1)研究 PWE 的体力活动模式;(2)比较抗药性癫痫和药物控制癫痫的 PWE 与年龄和性别匹配的健康对照组的活动模式;以及(3)探讨体力活动模式与 PWE 的身体功能和结构、活动和参与以及生活质量之间的关联:方法:共招募了 73 名 PWE 和 74 名健康对照者。方法:招募了 73 名残疾人和 74 名健康对照者,使用 SenseWear Arm Band 收集为期 7 天的体力活动数据。使用疲劳严重程度量表、30 秒椅子站立(30CST)、Biodex-跌倒风险、广泛性焦虑症、贝克抑郁量表、匹兹堡睡眠质量指数和蒙特利尔认知评估(MoCA)对 PWE 的身体功能和结构进行评估。使用特定活动平衡信心、定时起立行走测试、六分钟步行测试、Tinetti-Balance 和 Tinetti-Gait,对残疾人的活动和参与情况进行了测量。使用癫痫患者生活质量量表-31对癫痫患者的生活质量进行了评估:结果:与健康对照组相比,PWE 每天走的步数更少,久坐的时间更长(7826 步 vs. 10564 步,P = 0.01;534 分钟/天 vs. 463 分钟/天,P 结论:与健康对照组相比,PWE 每天走的步数更少,久坐的时间更长(534 分钟/天 vs. 463 分钟/天,P = 0.01):与健康人相比,患者的体力活动水平较低,尤其是耐药性癫痫患者。我们的研究突出表明,有必要量身定制包括姿势稳定性练习在内的策略,以提高 PWE 的体力活动水平。
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引用次数: 0
Assessment of temporal changes in cognitive effects induced by antiseizure medications in epilepsy patients 抗癫痫药物对癫痫患者认知影响的时间变化评估。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2025-02-01 DOI: 10.1016/j.yebeh.2024.110199
Ömer Karadaş , Javid Shafiyev , Akçay Övünç Karadaş , Uğur Burak Şimşek , Betül Özenç , Özlem Aksoy Özmenek

Objective

Numerous studies have been conducted investigating the effects of antiseizure medications (ASMs) on cognitive functions, and the cognitive side effects of some ASMs have been demonstrated. However, data on whether tolerance to these side effects develops over time is insufficient. The aim of this study is to evaluate the reversibility of cognitive impairments caused by ASMs in patients, utilizing event-related potentials (ERPs) and the Montreal Cognitive Assessment (MoCA) test.

Materials and Methods

The single-center prospective study was conducted from July 2022 to August 2023. This study enrolled participants aged 18 to 50 who had been diagnosed with epilepsy and were planning to commence treatment with an antiseizure medication (ASM). The inclusion criteria comprised individuals aged between 18 and 50 years, with a diagnosis of epilepsy, and who were intending to initiate a new ASM as monotherapy. Exclusion criteria encompassed individuals younger than 18 or older than 50 years, those diagnosed with psychogenic non-epileptic seizures, those currently on antiepileptic drugs, and those with cognitive dysfunction or dementia. Before starting treatment, patients were subjected to the MoCA test and ERP measurements by a neurologist. These tests and measurements were repeated at the second and sixth months of treatment.

Result

The study included a cohort of 254 participants with a mean age of 32.6 (±14) years. At the second month after starting treatment with carbamazepine (CBZ), zonisamide (ZNS), valproic acid (VPA), and topiramate (TPM), both MoCA and ERP values showed significantly worse cognitive impairment compared to before treatment (p < 0.05). This impairment showed a significant improvement by the sixth month for CBZ, ZNS, and VPA (p < 0.05). Although there was improvement in MoCA and ERP values in patients using TPM, the changes remained statistically significant compared to baseline values (p < 0.05). In patients using levetiracetam, lamotrigine, oxcarbazepine, and lacosamide, cognitive impairment was not statistically significant at either the second or sixth month.

Conclusion

This study demonstrated that the detrimental cognitive effects associated with CBZ, VPA, and ZNS could be reversible. Although some improvement was observed over time with TPM, the absence of significant recovery suggests that additional time may be required for a substantial reversal of these effects.
目的:研究抗癫痫药物(asm)对认知功能的影响,并证实了一些抗癫痫药物的认知副作用。然而,关于对这些副作用的耐受性是否随着时间的推移而发展的数据是不充分的。本研究的目的是利用事件相关电位(ERPs)和蒙特利尔认知评估(MoCA)测试来评估asm引起的患者认知障碍的可逆性。材料与方法:单中心前瞻性研究于2022年7月至2023年8月进行。本研究招募了年龄在18至50岁之间的被诊断为癫痫并计划开始抗癫痫药物治疗的参与者。纳入标准包括年龄在18至50岁之间,诊断为癫痫,并打算开始新的ASM作为单一疗法的个体。排除标准包括年龄小于18岁或年龄大于50岁的个体、被诊断为心因性非癫痫性发作的个体、目前正在服用抗癫痫药物的个体以及有认知功能障碍或痴呆的个体。在开始治疗前,患者接受由神经科医生进行的MoCA测试和ERP测量。这些测试和测量在治疗的第二个月和第六个月重复。结果:该研究纳入了254名参与者,平均年龄为32.6(±14)岁。在卡马西平(CBZ)、唑尼沙胺(ZNS)、丙戊酸(VPA)和托吡酯(TPM)治疗后第2个月,MoCA和ERP值均显示认知功能损害较治疗前加重(p)。结论:本研究表明CBZ、VPA和ZNS相关的有害认知影响是可逆的。虽然随着时间的推移,观察到一些改善,但没有明显的恢复表明,可能需要更多的时间才能实质性地扭转这些影响。
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引用次数: 0
Animal welfare assessment after controlled cortical impact in CD-1 mice – A model of posttraumatic epilepsy CD-1 小鼠受控皮层撞击后的动物福利评估--一种创伤后癫痫模型。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2025-02-01 DOI: 10.1016/j.yebeh.2024.110214
Ricardo Schmidt , Björn Welzel , Wolfgang Löscher
The ethical use of laboratory animals requires that the benefits of an experimental study are carefully weighed against potential harm to the animals. In traumatic brain injury (TBI) research, ethical concerns are especially relevant to severe TBI, after which animals may experience suffering, depending on the implementation of refinement measures such as (1) postsurgical analgesia during the initial period following TBI and (2) humane endpoints. However, despite the frequent use of rodent models such as fluid percussion injury (FPI) and controlled cortical impact (CCI) in rats or mice, there is only one recent study that applied assessment of welfare to a severe TBI model, the FPI model in rats. In the present pilot study in a CCI mouse model of posttraumatic epilepsy, we assessed animal welfare by a brain injury-specific severity scoresheet. Furthermore, nest building was used as a sensitive indicator of health and welfare in laboratory mice. Sham mice that underwent craniotomy but not CCI were used for comparison. Craniotomy and CCI were performed under anesthesia with isoflurane, followed by 3 days of postsurgical analgesia with the opioid l-methadone. Mannitol was used to prevent the head pain caused by increased intracranial pressure. Using the TBI-specific scoresheet to describe and monitor potential distress in animals, moderately increased scores were determined in CCI mice only over the first 2 days after surgery, indicating that animal suffering in this model is transitory. Similarly, significantly impaired nest building was observed at 1 but not 7 days after CCI. We conclude that with effective postsurgical analgesia and mannitol behavioral recovery is rapid in mice after CCI.
使用实验动物的伦理要求仔细权衡实验研究的好处和对动物的潜在危害。在创伤性脑损伤(TBI)研究中,伦理问题尤其与严重的TBI相关,在此之后,动物可能会经历痛苦,这取决于改进措施的实施,例如(1)TBI后初始阶段的术后镇痛和(2)人道终点。然而,尽管经常使用啮齿动物模型,如大鼠或小鼠的液体冲击损伤(FPI)和控制性皮质冲击(CCI),但最近只有一项研究将福利评估应用于严重TBI模型,即大鼠的FPI模型。在目前对创伤后癫痫的CCI小鼠模型的初步研究中,我们通过脑损伤特异性严重程度评分表评估动物福利。此外,筑巢被用作实验室小鼠健康和福利的敏感指标。进行开颅手术但未进行CCI的假小鼠进行比较。在异氟醚麻醉下行开颅术和CCI,术后3天用阿片类药物l-美沙酮镇痛。甘露醇用于预防颅内压升高引起的头痛。使用tbi特异性记分表来描述和监测动物的潜在痛苦,CCI小鼠仅在手术后的前2天内得分适度增加,表明该模型中的动物痛苦是暂时的。同样,在CCI后第1天,而不是第7天,观察到筑巢明显受损。我们得出结论,在有效的术后镇痛和甘露醇治疗下,小鼠CCI后行为恢复迅速。
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引用次数: 0
The impact of an epilepsy peer education program on knowledge, attitudes, and first aid approaches: A quasi-experimental design 癫痫同伴教育项目对知识、态度和急救方法的影响:一个准实验设计。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2025-02-01 DOI: 10.1016/j.yebeh.2024.110224
Yasemin Şahin Yıldız , Büşra Kurtuluş

Objective

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

Methods

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

Results

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

Significance

Our results show that peer-mediated learning is highly acceptable and that the training improves students’ knowledge, positive attitudes, and seizure first aid approaches. Given these results, it is suggested that school-based epilepsy peer education programs be developed and implemented for students who will become future health professionals.
目的:探讨同伴教育对学生癫痫知识、态度和急救方法的影响。方法:采用单组前测/后测准实验设计。同伴教育者为1343名同伴学生提供了培训。该项目包括两次面对面交流,每次持续60分钟。数据收集采用人口调查问卷、急救管理信息表、癫痫知识水平量表和癫痫态度量表。采用描述性统计、配对样本t检验和Pearson相关分析对数据进行分析。结果:训练后癫痫知识量表得分由8.17(±3.46)分上升至12.50(±2.41)分,癫痫态度量表得分由59.39(±7.32)分上升至61.01(±6.95)分。培训前学生的知识与态度之间存在显著的正相关(r = 0.305, p)。我们的研究结果表明,同伴中介学习是高度可接受的,培训提高了学生的知识、积极态度和癫痫急救方法。鉴于这些结果,建议为将来成为卫生专业人员的学生制定和实施以学校为基础的癫痫同伴教育计划。
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引用次数: 0
Navigating life after New-onset refractory status epilepticus (NORSE) and Febrile infection-related epilepsy syndrome (FIRES): Insights from caregiver and patient interviews 新发难治性癫痫持续状态(NORSE)和发热性感染相关癫痫综合征(FIRES)后的生活导航:来自护理人员和患者访谈的见解
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2025-02-01 DOI: 10.1016/j.yebeh.2024.110236
Krista Eschbach , Julia Reedy , Teneille Gofton , Margaret Gopaul , Raquel Farias-Moeller , Marissa Kellogg , Kelly Knupp , Lawrence J. Hirsch , Nora Wong , Brook Dorsey Holliman

Objective

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

Background

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

Methods

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

Results

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

Conclusion

NORSE has significant life-altering impacts on patients and caregivers. These findings highlight a need to evaluate outcomes and provide support that extends beyond seizure management.
目的:描述NORSE患者的生活体验,探讨患者及其护理人员的生活质量。背景:NORSE是一种罕见的疾病,其特征是难治性癫痫持续状态,通常原因不明,发生在以前神经健康的个体中。发热性感染相关癫痫综合征(FIRES)是NORSE的一个子集。NORSE与死亡率、急性发病率和神经认知后遗症的风险相关,但有关其长期影响的数据有限。方法:我们对患者和护理人员进行了深入的个人或二元半结构化访谈。访谈探讨了NORSE后的长期经验及其对患者和护理人员生活质量的影响。数据分析采用主题内容分析方法。结果:在2023年4月至2024年2月期间完成了14次访谈,包括5名患者和15名护理人员。NORSE发病的中位年龄为17岁(IQR: 11.00 - 20.25),自发病以来的中位年龄为5.60岁(IQR: 3.88 - 8.50)。虽然经验根据NORSE结果和发病时间而有所不同,但我们确定了以下主题:1)癫痫发作,药物副作用和合并症健康问题影响患者的独立性和生活质量;2)心理和行为健康问题加上孤独和孤立影响患者的生活质量;3)亲友关系变化影响患者社会生活质量和情绪生活质量;4)家庭成员照顾病人,并经历重大的生活变化。结论:NORSE对患者和护理人员有显著的生活改变影响。这些发现强调需要评估结果并提供癫痫发作管理以外的支持。
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引用次数: 0
Child with epilepsy in school environment – The development of a conceptual model 儿童癫痫在学校环境-一个概念模型的发展。
IF 2.3 3区 医学 Q2 BEHAVIORAL SCIENCES Pub Date : 2025-02-01 DOI: 10.1016/j.yebeh.2024.110246
Dana Brabcová Buršíková , Jiří Kohout , Martina Komzáková , Alena Nohavová , Vendula Tegelová

Objective

The aim of this qualitative study is to develop a conceptual model for the school life of the children with epilepsy based on grounded theory methodological framework.

Methodology

A total of 20 children with epilepsy participated in the semi-structured interviews. Inclusion criteria were age of 8–15 years, IQ higher than 70, duration of epilepsy of at least of two years and attendance of mainstream schools. 15 children had never seizure in school and 16 of them have not had a seizure in last 12 months. Qualitative research data was processed based on grounded theory with open coding leading consecutively to several main categories, axial coding establishing connections between individual categories, and finally selective coding resulting in one central category which was the core of the developed conceptual model.

Results

Eight main categories were identified during open coding: type of epilepsy and its management, sources of stress at school, adaptive responses to stressors, safe school environment in relation to (a) epilepsy and (b) learning, family support, stability of experience and behavior, and positive self-concept. Axial and selective coding resulted in establishment of Adaptive responses to stressors as the central category which is in the developed conceptual model determined by relevant external and internal factors as well as the sources enabling effective adaptation.

Conclusions

The presented research emphasize the importance of adaptive responses to stressors in the school environment among children with epilepsy which may be useful in counselling focused on how to avoid or successfully manage possible traumatizing experience related with epilepsy in this group.
目的:本定性研究的目的是建立一个基于扎根理论方法论框架的癫痫儿童学校生活的概念模型。方法:对20例癫痫患儿进行半结构化访谈。纳入标准为年龄8-15岁,智商≥70,癫痫病程≥2年,在主流学校就读。15名儿童在校期间从未发作过癫痫,其中16名儿童在过去12个月内没有发作过癫痫。定性研究数据以扎根理论为基础进行处理,开放编码依次引出几个主要类别,轴向编码建立各个类别之间的联系,最后选择性编码形成一个中心类别,这是所开发的概念模型的核心。结果:在开放编码期间确定了八个主要类别:癫痫类型及其管理、学校压力来源、对压力源的适应性反应、与(a)癫痫和(b)学习相关的安全学校环境、家庭支持、经验和行为的稳定性以及积极的自我概念。轴向编码和选择性编码导致对应激源的适应性反应作为中心类别的建立,这是由相关的外部和内部因素以及有效适应的来源决定的。结论:本研究强调了癫痫儿童在学校环境中对压力源的适应性反应的重要性,这可能有助于关注如何避免或成功管理与该群体癫痫相关的可能创伤经历的咨询。
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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 : 2025-02-01 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。
{"title":"What is the impact of etiology, lead time to treatment, and parental awareness on outcomes in infantile epileptic spasm syndrome?","authors":"Deniz Menderes ,&nbsp;Esra Serdaroğlu ,&nbsp;Tuğba Hırfanoğlu ,&nbsp;Ayşe Serdaroğlu ,&nbsp;Ebru Arhan","doi":"10.1016/j.yebeh.2024.110178","DOIUrl":"10.1016/j.yebeh.2024.110178","url":null,"abstract":"<div><h3>Objective</h3><div>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.</div></div><div><h3>Methods</h3><div>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.</div></div><div><h3>Results</h3><div>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.</div></div><div><h3>Conclusion</h3><div>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.</div></div>","PeriodicalId":11847,"journal":{"name":"Epilepsy & Behavior","volume":"163 ","pages":"Article 110178"},"PeriodicalIF":2.3,"publicationDate":"2025-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142791297","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
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 : 2025-02-01 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 : 2025-02-01 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
期刊
Epilepsy & Behavior
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