Epilepsy and Behavior Reports最新文献

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Personalized adherence interventions using medication adherence technologies in polypharmacy management in epilepsy: An interprofessional case report 在癫痫综合药房管理中使用药物依从性技术的个性化依从性干预:一份跨专业病例报告
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-06-01 Epub Date: 2025-04-07 DOI: 10.1016/j.ebr.2025.100767
Micheline C. Sarbach , Stephan Rüegg , Samuel S. Allemann , Isabelle Arnet
{"title":"Personalized adherence interventions using medication adherence technologies in polypharmacy management in epilepsy: An interprofessional case report","authors":"Micheline C. Sarbach ,&nbsp;Stephan Rüegg ,&nbsp;Samuel S. Allemann ,&nbsp;Isabelle Arnet","doi":"10.1016/j.ebr.2025.100767","DOIUrl":"10.1016/j.ebr.2025.100767","url":null,"abstract":"<div><div>We describe a male patient with symptomatic multifocal epilepsy struggling with medication adherence. He accepted escalating adherence interventions with conventional dosing aids such as pillboxes and medication adherence technologies (MATech) including a smart medication dispensing and adherence device (SMAD). Adherence metrics and drug levels were continuously monitored by electronic monitoring (EM) and therapeutic drug monitoring (TDM). Initially, adherence metrics with pre-filled punch cards supplied by a community pharmacy showed 64% taking adherence, 63% timing adherence, and 47% correctly dosed days, including a five-day medication holiday. Adherence improved with a pharmacy-filled SMAD, reaching 93% taking adherence, 90% timing adherence, 86% correctly dosed days, and no medication holiday. No epileptic seizures were noticed during periods with EM. The patient was satisfied with the SMAD while struggling with other adherence tools. Adherence tended to decrease once adherence reminders were removed. In conclusion, we emphasize the importance of personalized adherence strategies and shared decision-making. This case highlights the positive impact of an interprofessional adherence improvement program, integrating efforts from researchers, neurologists, and community pharmacists.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"30 ","pages":"Article 100767"},"PeriodicalIF":1.8,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143881715","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","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 : 2025-06-01 Epub 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":"2025-06-01","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
Exploring determinants of time to school re-entry after pediatric epilepsy surgery 探讨儿童癫痫手术后重返学校时间的决定因素
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-06-01 Epub Date: 2025-04-14 DOI: 10.1016/j.ebr.2025.100771
Evangeline A. Huis in 't Veld , Olga Braams , Willem M. Otte , Peter van Rijen , Kees P.J. Braun , Renske Schappin
{"title":"Exploring determinants of time to school re-entry after pediatric epilepsy surgery","authors":"Evangeline A. Huis in 't Veld ,&nbsp;Olga Braams ,&nbsp;Willem M. Otte ,&nbsp;Peter van Rijen ,&nbsp;Kees P.J. Braun ,&nbsp;Renske Schappin","doi":"10.1016/j.ebr.2025.100771","DOIUrl":"10.1016/j.ebr.2025.100771","url":null,"abstract":"<div><div>After epilepsy surgery, it varies when children re-enter school. The aim of this study was to identify determinants for this variation. Parents of 21 school-attending children participated in semi-structured interviews during their child’s hospitalization for epilepsy surgery and one year afterward (based on the standard neuropsychological post-surgical follow-up). The mean time to school re-entry was 10.7 weeks (SD = 6.3). One child did not attend school after one year, whilst the fastest child resumed school 2 weeks after surgery. We performed univariable linear regression models with bootstrapped R<sup>2</sup> for all variables deemed theoretically or clinically relevant to school re-entry. We found that temporal surgery was significantly related to shorter time to school re-entry; and that longer hospitalization, and presurgical outpatient educational counseling were significantly related to longer time to school re-entry. In multivariable linear regression, these variables together predicted 57% of variance (bootstrapped) in time to school re-entry. In conclusion, our findings indicate that school re-entry varies considerably among children but can partly be explained by surgery related variables and the presence of counseling. Given the importance of school in children’s daily lives, we argue that school attendance should be stimulated by increasing professionals’ awareness of children’s school re-entry process.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"30 ","pages":"Article 100771"},"PeriodicalIF":1.8,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143838023","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Responsive neurostimulation for patients with refractory mesial temporal lobe epilepsy: A systematic review and meta-analysis 反应性神经刺激治疗难治性内侧颞叶癫痫:一项系统回顾和荟萃分析
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-06-01 Epub Date: 2025-04-22 DOI: 10.1016/j.ebr.2025.100774
Eshita Sharma , Beatriz Westphalen Pomianoski , Rabbia Jabbar , Ayesha Ayesha , Yasmin Picanco Silva , Paweł Łajczak , Aisha Rizwan Ahmed , Oguz Kagan Sahin , Mir Wajid Majeed , Mohammed Raake , Walter Fagundes , Giovani Noll
{"title":"Responsive neurostimulation for patients with refractory mesial temporal lobe epilepsy: A systematic review and meta-analysis","authors":"Eshita Sharma ,&nbsp;Beatriz Westphalen Pomianoski ,&nbsp;Rabbia Jabbar ,&nbsp;Ayesha Ayesha ,&nbsp;Yasmin Picanco Silva ,&nbsp;Paweł Łajczak ,&nbsp;Aisha Rizwan Ahmed ,&nbsp;Oguz Kagan Sahin ,&nbsp;Mir Wajid Majeed ,&nbsp;Mohammed Raake ,&nbsp;Walter Fagundes ,&nbsp;Giovani Noll","doi":"10.1016/j.ebr.2025.100774","DOIUrl":"10.1016/j.ebr.2025.100774","url":null,"abstract":"<div><div>Responsive neurostimulation (RNS) is a well-established adjuvant therapy for reducing seizure frequency in adults with medically refractory partial-onset seizures, particularly in individuals who are either not candidates for surgical resection or remain seizure-prone post-surgery. However, its effectiveness in patients with mesial temporal lobe epilepsy (MTLE) remains unclear. This meta-analysis evaluates the efficacy of RNS therapy in individuals with medically refractory MTLE. A systematic search of PubMed, Cochrane, and Scopus databases was conducted to identify eligible studies. Outcomes assessed included mean seizure frequency reduction, responder rate (proportion of patients achieving ≥50 % reduction in seizure frequency), and the proportion of patients achieving seizure freedom within six months of follow-up. Statistical analyses were performed using STATA. Seven observational studies involving 207 patients were included. RNS was associated with a mean seizure frequency reduction of 68.76 % (95 % CI 57.16–80.37 %; I<sup>2</sup> = 81.68 %), a responder rate of 67.58 % (95 % CI 46.51–88.66 %; I<sup>2</sup> = 94 %), and seizure freedom within six months in 28.94 % of patients (95 % CI 3.03–54.86 %; I<sup>2</sup> = 88 %). Moderate to high heterogeneity was observed across the studies. RNS may represent a viable therapeutic option for patients with MTLE, demonstrating substantial reductions in seizure frequency and a notable proportion of patients achieving seizure freedom. Additional studies are needed to confirm these findings and to explore the comparative efficacy and safety of RNS therapy in relation to other treatment options.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"30 ","pages":"Article 100774"},"PeriodicalIF":1.8,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143870193","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Tramadol use and risk of seizure: A report of two cases and a review of recent literature 曲马多的使用和癫痫发作的风险:两个病例的报告和最近的文献综述
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-06-01 Epub Date: 2025-03-24 DOI: 10.1016/j.ebr.2025.100763
Emma Dolan , Norman Delanty
{"title":"Tramadol use and risk of seizure: A report of two cases and a review of recent literature","authors":"Emma Dolan ,&nbsp;Norman Delanty","doi":"10.1016/j.ebr.2025.100763","DOIUrl":"10.1016/j.ebr.2025.100763","url":null,"abstract":"<div><div>Tramadol is a common pain medication used in practice across numerous specialties. Increased incidence of tramadol abuse and overdose in recent decades has led to it being classified as a controlled drug in several countries. Tramadol appears to be an increasingly popular drug of abuse, possibly related to ease of access to it on prescription, and its potential euphoric effects.</div><div>We identified two cases of seizures directly related to tramadol exposure. We then reviewed recent literature on tramadol and its adverse effects, particularly looking at its effect on seizure risk and the incidence of seizures. We found that there were scarce recent studies on the relationship between tramadol and seizure risk. Of studies found, many were carried out in animal models. Tramadol-induced seizures were studied in humans more commonly in the context of overdose, and studies involving humans tended to have small patient cohorts and suggested further study in the area.</div><div>We suggest that tramadol may be useful as part of multi-modal analgesia in moderate to severe pain in specific contexts, but that greater awareness of its potential adverse effects, and particularly its potential to lower seizure threshold, is warranted. We feel that more readily available information specifically about tramadol’s effects on seizure threshold may be of interest to colleagues from any specialty prescribing opioid analgesia on a regular basis, but that colleagues treating patients with seizure disorders should be particularly aware of these potential adverse effects.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"30 ","pages":"Article 100763"},"PeriodicalIF":1.8,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143769032","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
Examining the role of physical activity in older adults with epilepsy 检查身体活动在老年癫痫患者中的作用
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-06-01 Epub Date: 2025-02-17 DOI: 10.1016/j.ebr.2025.100756
Stephen P. Klaus , Serdar Akkol , Smitha K. Achuthan , Annie He , Cynthia Zheng , Ed Faught , Halley B. Alexander
{"title":"Examining the role of physical activity in older adults with epilepsy","authors":"Stephen P. Klaus ,&nbsp;Serdar Akkol ,&nbsp;Smitha K. Achuthan ,&nbsp;Annie He ,&nbsp;Cynthia Zheng ,&nbsp;Ed Faught ,&nbsp;Halley B. Alexander","doi":"10.1016/j.ebr.2025.100756","DOIUrl":"10.1016/j.ebr.2025.100756","url":null,"abstract":"<div><div>Epilepsy disproportionately affects older adults due to acquired conditions including stroke, neurodegeneration and head trauma secondary to falls. Current literature lacks adequate representation of specific therapies and considerations for this cohort. Furthermore, older adults are more susceptible to the adverse effects of anti-seizure medications necessitating increased caution when treating. Non-pharmacological interventions, including physical activity (PA), are underrecognized, particularly in older adults where they may be of greatest benefit. The following narrative review describes how older adults are uniquely impacted by epilepsy and associated comorbidities. It examines the current literature with respect to PA in epilepsy and, where available, evidence for PA in older adults. This includes how PA can affect pathogenesis and reduce the incidence of epilepsy onset through the reduction of neuroinflammation. PA may also be utilized by older adults with epilepsy to improve cardiovascular function, seizure control, prevent falls and secondary head injury, as an adjunct treatment for mood disorders and cognitive decline, and to promote general well-being. PA has a large and underappreciated role to play in older adults with epilepsy and is increasingly being recognized by healthcare providers and incorporated into practice guidelines.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"30 ","pages":"Article 100756"},"PeriodicalIF":1.8,"publicationDate":"2025-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143549209","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
Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke-like episodes (MELAS) with high-frequency oscillations on scalp EEG: A case report 线粒体肌病、脑病、乳酸性酸中毒和脑卒中样发作(MELAS)伴头皮脑电图高频振荡1例报告
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-03-01 Epub Date: 2025-02-13 DOI: 10.1016/j.ebr.2025.100754
Keisuke Maeda , Himari Tsuboi , Nami Hosoda , Junichi Fukumoto , Shiho Fujita , Naohiro Ichino , Keisuke Osakabe , Keiko Sugimoto , Gen Furukawa , Naoko Ishihara
{"title":"Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke-like episodes (MELAS) with high-frequency oscillations on scalp EEG: A case report","authors":"Keisuke Maeda ,&nbsp;Himari Tsuboi ,&nbsp;Nami Hosoda ,&nbsp;Junichi Fukumoto ,&nbsp;Shiho Fujita ,&nbsp;Naohiro Ichino ,&nbsp;Keisuke Osakabe ,&nbsp;Keiko Sugimoto ,&nbsp;Gen Furukawa ,&nbsp;Naoko Ishihara","doi":"10.1016/j.ebr.2025.100754","DOIUrl":"10.1016/j.ebr.2025.100754","url":null,"abstract":"<div><div>Mitochondrial myopathy, encephalopathy, lactic acidosis, and stroke-like episodes (MELAS) is a rare mitochondrial disease with a prevalence of 16–18 per 100,000 persons. Most patients with MELAS develop epilepsy and require effective control of recurrent attacks. High-frequency oscillations (HFOs) on scalp EEG are transient bursts of EEG activity with frequencies beyond 80 Hz and are a promising biomarker for seizure control in epilepsy. However, reports on scalp HFOs are limited to some epilepsy syndromes. Herein, we report on the appearance of scalp HFOs in a pediatric patient with MELAS. The patient, a 13-year-old boy, presented with a stroke-like episode at age 9 years and was diagnosed with MELAS. The main symptom was visual disturbances, but epilepsia partialis continua (EPC) was also observed. Scalp EEG recordings were made six times: 8 days before the stroke-like episode (day –8 EEG), the day of appearance (day 1 EEG), and 4, 8, 10, and 100 days after the episode. Analysis of scalp HFOs showed that no scalp HFOs were detected in the day –8 EEG, whereas 1.20 scalp HFOs per minute were detected in the day 1 EEG at the appearance of the stroke-like episode with EPC. The scalp HFO detection rate decreased with the loss of EPC, and no scalp HFOs appeared on EEG, although visual disturbances continued to be observed. By contrast, epileptic discharges remained on EEG after EPC disappearance. Scalp HFOs have the potential to be a useful biomarker for reflecting epileptic seizure in patients with MELAS.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100754"},"PeriodicalIF":1.8,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143437586","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
Heterogeneous knowledge of childhood seizures and epilepsy care in Canadian healthcare Providers: Identifying the gaps 加拿大医疗保健提供者对儿童癫痫发作和癫痫护理的异质性知识:确定差距。
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-03-01 Epub Date: 2024-12-06 DOI: 10.1016/j.ebr.2024.100733
Kregel Michelle , Sherry Coulson , Emily Guarasci , Andrade Andrea
{"title":"Heterogeneous knowledge of childhood seizures and epilepsy care in Canadian healthcare Providers: Identifying the gaps","authors":"Kregel Michelle ,&nbsp;Sherry Coulson ,&nbsp;Emily Guarasci ,&nbsp;Andrade Andrea","doi":"10.1016/j.ebr.2024.100733","DOIUrl":"10.1016/j.ebr.2024.100733","url":null,"abstract":"<div><div>Epilepsy is the most common chronic neurological condition in children. Many barriers exist in early recognition which cause delay in care and impact quality of life. Some of these children require advanced treatments which are underutilized due to lack of education, awareness and referrals. Overall, childhood epilepsy is underdiagnosed and poorly understood by non-expert providers. We investigated awareness and knowledge about epilepsy from primary care providers via the quality of their referrals. We prospectively collected and examined all epilepsy related referrals to the Paediatric Neurology Division at Children’s Hospital in London, Ontario, Canada during a six-month period. We developed a modified “epilepsy focused” scoring tool to evaluate the referrals and scored them as basic or advanced. During the study time frame 175 (82 %) referrals met the inclusion criteria. Out of these, 152 (87 %) were identified as basic and 23 (13 %) were advanced (p &lt; 0.001). Amongst the referrals that scored basic vs advanced: Family Doctors n = 49 with 40 basic (81 %) vs 9 advanced (18.3 %), Paediatric ER physicians n = 37, all 37 were basic (100 %) and Paediatricians n = 41 with 36 (87 %) basic and 5 (12 %) advanced. Our results showed significant lack of critical information in the content of epilepsy referrals coming from non-epileptologist providers, largely from the cohort of paediatric ED doctors. This reveals that knowledge and awareness of epilepsy in children remains scarce. Identifying these barriers can provide insights to develop strategies to facilitate accurate identification and rapid triage for children presenting with new onset epilepsy.</div></div>","PeriodicalId":36558,"journal":{"name":"Epilepsy and Behavior Reports","volume":"29 ","pages":"Article 100733"},"PeriodicalIF":1.8,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11729034/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142980082","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 : 2025-03-01 Epub 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":"2025-03-01","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
Efficacy of propofol and midazolam combination in managing refractory epileptic encephalopathy with spike-wave activation in sleep 异丙酚和咪达唑仑联合治疗难治性癫痫性脑病伴睡眠尖峰波激活的疗效。
IF 1.8
Epilepsy and Behavior Reports Pub Date : 2025-03-01 Epub Date: 2024-12-03 DOI: 10.1016/j.ebr.2024.100732
Xiaorui Liu , Tiejia Jiang , Lu Xu , Weiran Zhang , Feng Gao
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