Epilepsy and Behavior Reports最新文献

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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
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
{"title":"Utility and safety of epilepsy monitoring unit in an inpatient psychiatric setting in Japan","authors":"Go Taniguchi ,&nbsp;Mao Fujioka ,&nbsp;Yumiko Okamura ,&nbsp;Minako Miyagi ,&nbsp;Kenichi Yano ,&nbsp;Shinsuke Kondo ,&nbsp;Kiyoto Kasai","doi":"10.1016/j.ebr.2025.100744","DOIUrl":"10.1016/j.ebr.2025.100744","url":null,"abstract":"<div><div>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 &gt;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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100744"},"PeriodicalIF":1.8,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143387209","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
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
{"title":"Alice in Wonderland Syndrome: Localising insights from right visual cortex stroke complicated by epilepsia partialis continua","authors":"Gashirai K. Mbizvo ,&nbsp;Viraj Bharambe ,&nbsp;Brython Hywel ,&nbsp;Shubhabrata Biswas ,&nbsp;Andrew J. Larner","doi":"10.1016/j.ebr.2025.100745","DOIUrl":"10.1016/j.ebr.2025.100745","url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100745"},"PeriodicalIF":1.8,"publicationDate":"2025-01-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143129968","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
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
{"title":"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","authors":"Amir Reza Bahadori ,&nbsp;Parisa Javadnia ,&nbsp;Afshan Davari ,&nbsp;Sajad Shafiee ,&nbsp;Sara Ranji ,&nbsp;Mehrdad Sheikhvatan ,&nbsp;Abbas Tafakhori","doi":"10.1016/j.ebr.2025.100742","DOIUrl":"10.1016/j.ebr.2025.100742","url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100742"},"PeriodicalIF":1.8,"publicationDate":"2025-01-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143129967","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
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
{"title":"The use of newer anti-seizure medicines in women with epilepsy in pregnancy: A case series","authors":"Joan E. Devin ,&nbsp;Fergal O’Shaughnessy ,&nbsp;Muskan Sardana ,&nbsp;Brian J. Cleary ,&nbsp;Jennifer C. Donnelly ,&nbsp;Nicola Maher","doi":"10.1016/j.ebr.2025.100741","DOIUrl":"10.1016/j.ebr.2025.100741","url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100741"},"PeriodicalIF":1.8,"publicationDate":"2025-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143129966","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
Epilepsy and Behavior Reports Pub Date : 2024-12-28 DOI: 10.1016/j.ebr.2024.100739
Luciana Giambarberi , Halley B. Alexander , Heidi Munger Clary
{"title":"ADHD in Adults with Epilepsy: A Guide for Neurologists","authors":"Luciana Giambarberi ,&nbsp;Halley B. Alexander ,&nbsp;Heidi Munger Clary","doi":"10.1016/j.ebr.2024.100739","DOIUrl":"10.1016/j.ebr.2024.100739","url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100739"},"PeriodicalIF":1.8,"publicationDate":"2024-12-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143129969","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
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
{"title":"Hippocampal gene expression changes associated with sequential behavioral training in a temporal lobe epilepsy rat model","authors":"Rudhab Bahabry,&nbsp;Silvienne Sint Jago,&nbsp;Rebecca M. Hauser,&nbsp;Jonathan Harmon,&nbsp;Leah Dinah Sheppard,&nbsp;Bellafaith Oyassan,&nbsp;Farah D. Lubin","doi":"10.1016/j.ebr.2024.100735","DOIUrl":"10.1016/j.ebr.2024.100735","url":null,"abstract":"<div><div>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 <em>BDNF, dFosB, Tet2, and Tet3</em> expression in the epilepsy-SBT group compared to control-SBT, while there was a reduction in <em>Npas4</em> and <em>Egr4 expression</em>. 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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100735"},"PeriodicalIF":1.8,"publicationDate":"2024-12-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11786087/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143081545","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
Epilepsy and Behavior Reports Pub Date : 2024-12-26 DOI: 10.1016/j.ebr.2024.100740
Chalongchai Phitsanuwong , Stephanie Schimpf , Sho T. Yano
{"title":"Favorable response to ketogenic diet therapy in a patient with DYNC1H1-related epilepsy","authors":"Chalongchai Phitsanuwong ,&nbsp;Stephanie Schimpf ,&nbsp;Sho T. Yano","doi":"10.1016/j.ebr.2024.100740","DOIUrl":"10.1016/j.ebr.2024.100740","url":null,"abstract":"<div><div>Dynein Cytoplasmic 1 Heavy chain 1 (<em>DYNC1H1)</em>-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 <em>DYNC1H1</em> 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 <em>with DYNC1H1-</em>related epilepsy<em>.</em></div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100740"},"PeriodicalIF":1.8,"publicationDate":"2024-12-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11743897/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143013429","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
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
{"title":"Management recommendations to reduce cardiac risk in chronic epilepsy","authors":"Trudy D. Pang ,&nbsp;Richard L. Verrier ,&nbsp;Steven C. Schachter","doi":"10.1016/j.ebr.2024.100738","DOIUrl":"10.1016/j.ebr.2024.100738","url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100738"},"PeriodicalIF":1.8,"publicationDate":"2024-12-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143130021","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
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
{"title":"Caregiver burden associated with caring for individuals with tuberous sclerosis complex-associated seizures: A descriptive, non-interventional survey in Sweden","authors":"Siu Hing Lo ,&nbsp;Hanna Skrobanski ,&nbsp;Miranda Harrison ,&nbsp;Jamshaed Siddiqui ,&nbsp;Sally Bowditch","doi":"10.1016/j.ebr.2024.100737","DOIUrl":"10.1016/j.ebr.2024.100737","url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100737"},"PeriodicalIF":1.8,"publicationDate":"2024-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11787012/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143081539","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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
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
{"title":"Caregiver burden and healthcare providers perspectives in epilepsy: An observational study in China, Taiwan, and Argentina","authors":"Ioannis Karakis ,&nbsp;Santiago Flesler ,&nbsp;Sanman Ghorpade ,&nbsp;Rio Carla Pineda ,&nbsp;Kalpesh Joshi ,&nbsp;James Cooper ,&nbsp;Shilpa Patkar ,&nbsp;Andrea Schulz ,&nbsp;Savita Bakhshi Anand ,&nbsp;Nicola Barnes","doi":"10.1016/j.ebr.2024.100736","DOIUrl":"10.1016/j.ebr.2024.100736","url":null,"abstract":"<div><div>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.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"30 ","pages":"Article 100736"},"PeriodicalIF":1.8,"publicationDate":"2024-12-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143549208","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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