Epilepsy Management

  • 文章类型: Journal Article
    癫痫是一种广泛的社会疾病,影响所有年龄段的人,通常涉及诊断和治疗困难。除了癫痫控制之外,有必要确保癫痫患者有良好的生活质量和对人权的尊重,寻求提高自我管理能力,打破污名。癫痫患者应该有特权进入专门的癫痫中心,多学科护理是可能的。这些中心,由不同的复杂程度组织,应该在全国范围内统一分布,并联网在一起。因此,科学界和卫生保健组织必须设计所有必要的策略,以便提高普通人群对癫痫的认识,并有效实施最有效的护理途径。
    Epilepsy is a widespread social disease that affects people of all ages and often involves both diagnostic and therapeutic difficulties. Beyond seizure control, it is necessary to ensure people with epilepsy a good quality of life and respect for human rights, seeking to increase self-management capacity and break down stigma. People with epilepsy should have privileged access to specialized epilepsy centers, where multidisciplinary care is possible. These centers, organized by different levels of complexity, should be uniformly distributed throughout the country and networked together. The scientific community and health care organizations must therefore design all necessary strategies so that knowledge about epilepsy improves among the general population and the most effective pathways of care are effectively implemented.
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  • 文章类型: Journal Article
    临床药学,根据欧洲临床药学学会的定义,是一个全面的专业实践,涵盖了所有的药剂师配置文件,无论设置。它侧重于促进以患者为中心的临床结果的最佳药物利用。远程医疗利用信息和通信技术提供远程医疗服务,弥合地理差距。临床药学和远程医疗的整合在现代医疗保健范式中至关重要,尤其是慢性病患者。2021年,尽管有至少两种抗癫痫药物的治疗史,但仍未得到充分控制的成人癫痫患者中,有或没有继发性泛化的局灶性发作性癫痫发作的辅助治疗获得了上市许可。这篇综述强调了临床药师和神经科医师在利用远程医疗进行患者咨询方面的协同作用。药物信息传播,药物不良反应监测,以及在癫痫护理背景下的个性化药物管理。这种整合可以提高患者的安全性,治疗结果和解决慢性病患者面临的社会经济挑战。
    Clinical pharmacy, as defined by the European Society of Clinical Pharmacy, is a comprehensive professional practice encompassing all pharmacist profiles regardless of the setting. It focuses on promoting optimal drug utilization for patient-centric clinical outcomes. Telemedicine leverages information and communication technologies for remote healthcare delivery, bridging geographical gaps. The integration of clinical pharmacy and telemedicine is crucial in modern healthcare paradigms, especially for patients with chronic illnesses. In 2021, marketing authorization was granted for cenobamate as adjunctive treatment for focal-onset seizures with or without secondary generalization in adults with epilepsy who have not been adequately controlled despite a history of treatment with at least two antiepileptic medicinal products. This review emphasizes the synergistic role of clinical pharmacists and neurologists in utilizing telemedicine for patient counselling, drug information dissemination, adverse drug reaction surveillance, and personalized medication management within the context of epilepsy care. This integration could enhance patient safety, therapeutic outcomes and address socio-economic challenges faced by chronic patients.
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  • 文章类型: Journal Article
    这篇综述探讨了专门用于治疗癫痫的可穿戴数字健康技术的最新进展。由于癫痫发作的不可预测的性质,癫痫在监测和管理方面提出了独特的挑战。可穿戴设备提供连续监测和实时数据收集,提供对癫痫发作模式和趋势的见解。可穿戴技术在癫痫管理中很重要,因为它可以早期发现,预测,和个性化干预,赋予患者和医疗保健提供者权力。主要发现凸显了可穿戴设备提高癫痫发作检测准确性的潜力,通过实时监控增强患者赋权,并促进临床实践中数据驱动的决策。然而,需要进一步的研究来验证这些器械在不同患者人群和临床环境中的准确性和可靠性.研究人员之间的合作努力,临床医生,技术开发人员,患者对于推动可穿戴数字健康技术在癫痫管理方面的创新和进步至关重要,最终改善患有这种神经系统疾病的患者的预后和生活质量。
    This review explores recent advancements in wearable digital health technology specifically designed to manage epilepsy. Epilepsy presents unique challenges in monitoring and management due to the unpredictable nature of seizures. Wearable devices offer continuous monitoring and real-time data collection, providing insights into seizure patterns and trends. Wearable technology is important in epilepsy management because it enables early detection, prediction, and personalized intervention, empowering patients and healthcare providers. Key findings highlight the potential of wearable devices to improve seizure detection accuracy, enhance patient empowerment through real-time monitoring, and facilitate data-driven decision-making in clinical practice. However, further research is needed to validate the accuracy and reliability of these devices across diverse patient populations and clinical settings. Collaborative efforts between researchers, clinicians, technology developers, and patients are essential to drive innovation and advancements in wearable digital health technology for epilepsy management, ultimately improving outcomes and quality of life for individuals with this neurological condition.
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  • 文章类型: Journal Article
    背景:癫痫,一种全球流行的神经系统疾病,在管理方面提出了不同的挑战,特别是对于局灶性发作类型。本研究旨在解决当前局灶性癫痫管理中的挑战和观点。专注于意大利的现实。
    方法:使用德尔菲方法,本研究收集并分析了意大利癫痫专家小组在局灶性癫痫治疗关键方面的共识水平.重点领域包括患者流量,治疗途径,控制与不控制的癫痫,后续协议,以及患者报告结果(PRO)的相关性。这种方法可以全面评估临床意见和实践中的共识和分歧。
    结果:该研究在26项声明中的23项达成了共识,有三项未能达成共识。大家对及时干预的重要性达成了强烈共识,个性化治疗计划,癫痫中心定期随访,以及PRO在临床实践中的作用。在未控制的局灶性癫痫的情况下,在之前的两种疗法均失败后,人们明显倾向于寻求替代治疗方案。关于将癫痫手术纳入不受控制的癫痫治疗以及在随访中进行脑电图评估的常规必要性,存在分歧。其他关键发现包括对缺乏儿科特异性研究限制了该患者人群的当前治疗选择的担忧。对儿童护理向成人护理过渡的关注不够,需要改善沟通。结果强调了治疗癫痫的复杂性,在患者护理方面达成广泛共识,但在具体治疗和管理方法上存在显著差异。
    结论:该研究为控制局灶性发作性癫痫的当前状态和复杂性提供了有价值的见解。它强调了意大利现实中局灶性发作癫痫治疗途径的许多缺陷,虽然它也强调了以患者为中心的护理的重要性,早期和适当干预的必要性,和个性化的治疗方法。研究结果还要求继续研究,政策制定,和医疗保健系统的改进,以加强癫痫管理,强调了在这个不断发展的领域中对量身定制的医疗保健解决方案的持续需求。
    BACKGROUND: Epilepsy, a globally prevalent neurological condition, presents distinct challenges in management, particularly for focal-onset types. This study aimed at addressing the current challenges and perspectives in focal epilepsy management, with focus on the Italian reality.
    METHODS: Using the Delphi methodology, this research collected and analyzed the level of consensus of a panel of Italian epilepsy experts on key aspects of focal epilepsy care. Areas of focus included patient flow, treatment pathways, controlled versus uncontrolled epilepsy, follow-up protocols, and the relevance of patient-reported outcomes (PROs). This method allowed for a comprehensive assessment of consensus and divergences in clinical opinions and practices.
    RESULTS: The study achieved consensus on 23 out of 26 statements, with three items failing to reach a consensus. There was strong agreement on the importance of timely intervention, individualized treatment plans, regular follow-ups at Epilepsy Centers, and the role of PROs in clinical practice. In cases of uncontrolled focal epilepsy, there was a clear inclination to pursue alternative treatment options following the failure of two previous therapies. Divergent views were evident on the inclusion of epilepsy surgery in treatment for uncontrolled epilepsy and the routine necessity of EEG evaluations in follow-ups. Other key findings included concerns about the lack of pediatric-specific research limiting current therapeutic options in this patient population, insufficient attention to the transition from pediatric to adult care, and need for improved communication. The results highlighted the complexities in managing epilepsy, with broad consensus on patient care aspects, yet notable divergences in specific treatment and management approaches.
    CONCLUSIONS: The study offered valuable insights into the current state and complexities of managing focal-onset epilepsy. It highlighted many deficiencies in the therapeutic pathway of focal-onset epilepsy in the Italian reality, while it also underscored the importance of patient-centric care, the necessity of early and appropriate intervention, and individualized treatment approaches. The findings also called for continued research, policy development, and healthcare system improvements to enhance epilepsy management, highlighting the ongoing need for tailored healthcare solutions in this evolving field.
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  • 文章类型: Journal Article
    结节性硬化症(TSC)是一种罕见的多系统遗传性疾病,其特征是多器官中的良性肿瘤生长。包括大脑,肾脏,心,眼睛,肺,和皮肤。发病机制源于TSC1或TSC2基因的突变,编码蛋白质哈马汀和结核菌素,分别。这些蛋白质形成抑制mTOR通路的复合物,细胞生长和增殖的关键调节剂。结核菌素-hamartin复合物的破坏导致mTOR信号的过度激活和不受控制的细胞生长,导致错构瘤形成。神经系统表现在TSC中很常见,癫痫在高达90%的患者中发展。癫痫发作往往难以用抗癫痫药物治疗。婴儿痉挛和局灶性癫痫是主要的癫痫发作类型,通常出现在儿童早期。抗药性癫痫对发病率和死亡率有显著影响。这篇综述提供了有关发病机理的知识的当前状态的全面概述,临床表现,以及TSC的癫痫和其他神经系统特征的治疗方法。虽然存在关于TSC的叙述性评论,这篇综述独特地综合了TSC神经病理学领域的关键进展,传统和新兴的药物疗法,和有针对性的治疗。评论本质上是叙述性的,没有任何日期限制,并总结了有关TSC的神经系统方面和管理的最相关文献。通过巩固目前对TSC神经生物学和循证治疗策略的理解,这篇综述提供了宝贵的参考,突出了所取得的进展,同时也强调了需要进一步研究以优化TSC患者的护理和结局的领域.
    Tuberous sclerosis complex (TSC) is a rare multisystem genetic disorder characterized by benign tumor growth in multiple organs, including the brain, kidneys, heart, eyes, lungs, and skin. Pathogenesis stems from mutations in either the TSC1 or TSC2 gene, which encode the proteins hamartin and tuberin, respectively. These proteins form a complex that inhibits the mTOR pathway, a critical regulator of cell growth and proliferation. Disruption of the tuberin-hamartin complex leads to overactivation of mTOR signaling and uncontrolled cell growth, resulting in hamartoma formation. Neurological manifestations are common in TSC, with epilepsy developing in up to 90% of patients. Seizures tend to be refractory to medical treatment with anti-seizure medications. Infantile spasms and focal seizures are the predominant seizure types, often arising in early childhood. Drug-resistant epilepsy contributes significantly to morbidity and mortality. This review provides a comprehensive overview of the current state of knowledge regarding the pathogenesis, clinical manifestations, and treatment approaches for epilepsy and other neurological features of TSC. While narrative reviews on TSC exist, this review uniquely synthesizes key advancements across the areas of TSC neuropathology, conventional and emerging pharmacological therapies, and targeted treatments. The review is narrative in nature, without any date restrictions, and summarizes the most relevant literature on the neurological aspects and management of TSC. By consolidating the current understanding of TSC neurobiology and evidence-based treatment strategies, this review provides an invaluable reference that highlights progress made while also emphasizing areas requiring further research to optimize care and outcomes for TSC patients.
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  • 文章类型: Letter
    暂无摘要。
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  • 文章类型: Journal Article
    癫痫是最常见的慢性神经系统疾病,其特征是癫痫发作后头痛反复发作。研究表明,自我管理是提高癫痫患者生活质量和护理质量的重要因素。手机技术在患者护理援助和治疗癫痫中起着潜在的作用。这项系统评价旨在研究移动健康在癫痫治疗中的作用。这项研究是通过搜索数据库进行的,如PubMed,Scopus,WebofScience,和谷歌学者搜索引擎使用以下关键词:“m-健康,\"\"移动健康,\"\"远程医疗,\"\"移动应用程序,\"\"智能手机,\"\"癫痫,“和”癫痫管理。搜索了1990年1月1日至2021年9月1日发表的文章。纳入标准包括所有以英语发表的文章,重点是mHealth在癫痫治疗中的作用。忽略了与患者无关的评论文章和研究。在这项研究中,在总共4225篇文章中,10项研究符合全文纳入标准。三种类型的研究(30%)在美国完成,五项研究(50%)作为随机对照试验进行,八篇文章(80%)质量最高。在经过审议的文章中,有3篇文章(30%)对使用者进行了癫痫管理方面的培训.五篇文章(50%)报告了癫痫患者的癫痫发作控制有所改善,两篇文章(20%)没有报告任何显着改善。移动技术在提供健康评估方面具有很好的作用,教育,以及为患者提供的其他服务,它们还有助于控制癫痫发作和改善癫痫管理。这些技术具有很大的吸引力,利用它们将使患者满意。
    Epilepsy is the most common chronic neurologic disease which is characterized by recurrent attacks of headache after seizure. Researches show that self-management is an important factor in improving the quality of life and quality of care of people affected by epilepsy. Mobile phone technologies play a potential role in patient care assistance and treatment of epilepsy. This systematic review was conducted with an aim to study the role of mobile health in the management of epilepsy. This study was conducted by searching databases such as PubMed, Scopus, Web of Science, and Google scholar search engines using the following keywords: \"m-health,\" \"mobile health,\" \"Telemedicine,\" \"Mobile Application,\" \"Smartphone,\" \"epilepsy,\" and \"epilepsy management.\" Articles published from January 1, 1990 to September 1, 2021 were searched. Inclusion criteria included all articles published in English with a focus on the role of mHealth in the management of epilepsy. Review articles and studies that were not about patients were omitted. In this study, of a total of 4225 retrieved articles, 10 studies met the full-text inclusion criteria. Three types of researches (30%) were done in the USA, five studies (50%) were conducted as randomized controlled trials, and eight articles (80%) had the highest quality. Among the considered articles, three articles (30%) were engaged in training users in epilepsy management. Five articles (50%) reported improvement in seizure control in patients with epilepsy and two articles (20%) did not report any significant improvement. Mobile technologies have a promising role in providing health assessment, education, and other services for patients, and they also help in controlling seizures attack and improvement of epilepsy management. These technologies enjoy great attractiveness, and utilizing them will lead to patient satisfaction.
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  • 文章类型: Journal Article
    目的:自动癫痫发作检测模式可以提高癫痫患者(PWE)的安全性并减少与癫痫发作相关的焦虑。我们评估了新加坡PWE癫痫发作检测移动应用程序的潜在成本效益。
    方法:我们使用了马尔可夫队列模型,从健康提供者的角度,估计了采用癫痫发作检测应用与当前护理标准的决定对总费用和健康结果的预期变化。时间范围为十年,周期持续时间为一个月。参数值从国家数据库和已发表的文献中更新。由于我们不知道减少癫痫相关伤害的应用功效,使用保守估计减少1%.概率敏感性分析,情景分析,并进行了信息价值分析。
    结果:在愿意支付$45,000/质量调整生命年(QALY)的情况下,增量成本效益比为1096美元/季度,增量净货币收益为13656美元。概率敏感性分析报告说,该应用程序具有99.5%的成本效益。在一个情景分析中,癫痫相关损伤的风险降低了20%,有99.8%的机会,该应用程序具有成本效益。信息分析的价值表明,健康效用是导致模型不确定性的最重要的参数组。
    结论:这项早期建模研究表明,与目前的护理标准相比,癫痫发作检测应用可能具有成本效益。未来的前瞻性试验将需要证明应用的现实世界的影响。健康相关生活质量的变化也应在未来的试验中进行测量。
    OBJECTIVE: Automated seizure detection modalities can increase safety among people with epilepsy (PWE) and reduce seizure-related anxiety. We evaluated the potential cost-effectiveness of a seizure detection mobile application for PWE in Singapore.
    METHODS: We used a Markov cohort model to estimate the expected changes to total costs and health outcomes from a decision to adopt the seizure detection application versus the current standard of care from the health provider perspective. The time horizon is ten years and cycle duration is one month. Parameter values were updated from national databases and published literature. As we do not know the application efficacy in reducing seizure-related injuries, a conservative estimate of 1% reduction was used. Probabilistic sensitivity analysis, scenario analyses, and value of information analysis were performed.
    RESULTS: At a willingness-to-pay of $45,000/ quality-adjusted life-years (QALY), the incremental cost-effectiveness ratio was $1,096/QALY, and the incremental net monetary benefit was $13,656. Probabilistic sensitivity analyses reported that the application had a 99.5% chance of being cost-effective. In a scenario analysis in which the reduction in risk of seizure-related injury was 20%, there was a 99.8% chance that the application was cost-effective. Value of information analysis revealed that health utilities was the most important parameter group contributing to model uncertainty.
    CONCLUSIONS: This early-stage modeling study reveals that the seizure detection application is likely to be cost-effective compared to current standard of care. Future prospective trials will be needed to demonstrate the real-world impact of the application. Changes in health-related quality of life should also be measured in future trials.
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  • 文章类型: Journal Article
    癫痫是一种弥漫性慢性神经系统疾病,影响全球约5000万人。必须符合国际抗癫痫联盟的诊断标准才能诊断疾病,其特征是涉及一个或两个半球的神经元异常活动的短暂和短暂的发作,取决于癫痫类型。癫痫的诊断应该正确和及时,因为患有这种疾病的患者不仅会受到癫痫发作复发的影响,还会受到癫痫相关的精神病和/或认知合并症的影响,这些合并症可能会产生巨大的影响,并具有严重的职业和社会影响。至关重要的是,必须定义一种特定的治理模式,该模式必须有效地应用于癫痫患者临床路径的不同阶段,以确保他们成为可能的最佳护理模式。
    Epilepsy is a diffuse chronic neurological disease affecting around 50 million people worldwide. The diagnostic criteria by the International League against Epilepsy must be fulfilled to diagnose the disease, which is characterized by brief and transient episodes of abnormal neuronal activity involving one or both hemispheres, depending on the epilepsy type. The diagnosis of epilepsy should be properly and timely made because patients suffering from the disease are affected not only by seizure recurrence but also by epilepsy-related psychiatric and/or cognitive comorbidities that may have a huge impact with severe professional and social implications. It is of vital importance to define a specific governance model that has to be virtuously applied into the different phases of the clinical pathway of the patients with epilepsy in order to guarantee them the best model of care possible.
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  • 文章类型: Journal Article
    People with epilepsy (PWE) must manage their condition properly for both quality and longevity of life. Effective self-management is critical and can be monitored via levels of patient activation (i.e., a continuum of taking a passive vs active role in personal healthcare) and the presence/severity of seizures. One known influencer of self-management is the quality of one\'s intimate relationship, a documented area of major concern for PWE. Here we examined a critical facet of PWEs\' intimate relationships-(un)constructive communication with their partner.
    Using data from a web-based survey of 89 PWE, and regression-based mediation analyses, we examined associations with patient activation and seizure severity. We added further explanatory utility by examining relationship satisfaction as a mediator of those links.
    There were positive links between more constructive communication, more patient activation, and less severe seizures. The explanatory path of constructive communication to better relationship satisfaction to lower seizure severity emerged as a significant partial mediation (i.e., direct effect remained significant), while relationship satisfaction fully mediated (i.e., direct effect became non-significant) the link between constructive communication and greater patient activation.
    Our results provide insight into how relationship processes may impact the experience of epilepsy, including seizure severity and patient activation. Future research is needed.
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