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Transition of Care for Adolescent and Young Adult Patients on Dietary Therapy for Epilepsy 青少年和青壮年癫痫患者饮食治疗的护理转变
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-09-18 DOI: 10.1055/s-0040-1716550
K. Seaborg, Kelly Faltersack, E. Felton
Abstract Ketogenic diets are high-fat, low-carbohydrate diets designed to alter metabolism, induce nutritional ketosis, and reduce seizures in patients with epilepsy. In the past 15 to 20 years, the diets have been refined, gaining momentum in the treatment of resistant epilepsy. As ketogenic diets have gained popularity for treatment of pediatric epilepsies, an increasing number of adolescents treated with dietary therapy are approaching the age of transitioning their care to adult providers. Transition of care for this vulnerable population brings unique challenges posed by a paucity of adult providers who prescribe ketogenic diets, a lack of adult nutritionists trained in dietary therapy for epilepsy, and reluctance of pediatric patients to transition care. In this article, we will discuss the rationale for establishing transition protocols for young adult patients with epilepsy and present guidelines for transition of care for patients treated with dietary therapy for epilepsy.
生酮饮食是一种高脂肪、低碳水化合物的饮食,旨在改变癫痫患者的代谢,诱导营养性酮症,减少癫痫发作。在过去的15到20年里,饮食得到了改进,在治疗顽固性癫痫方面取得了进展。随着生酮饮食在儿童癫痫治疗中越来越受欢迎,越来越多接受饮食治疗的青少年正接近将他们的护理转移给成人提供者的年龄。对这一弱势群体的过渡护理带来了独特的挑战,包括缺乏开生酮饮食的成人提供者,缺乏接受过癫痫饮食治疗培训的成人营养学家,以及儿科患者不愿接受过渡护理。在本文中,我们将讨论为年轻成年癫痫患者建立过渡方案的基本原理,并为癫痫患者饮食治疗的过渡护理提供指南。
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引用次数: 0
The Importance of Assessing and Treating Mental Health in Transition-Aged Adolescents with Epilepsy: A 1-Year Follow-up 评估和治疗过渡年龄青少年癫痫患者心理健康的重要性:1年随访
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-09-18 DOI: 10.1055/s-0040-1716867
S. Healy, T. Fantaneanu, S. Whiting
Abstract Mental health issues become especially problematic when adolescents with epilepsy are preparing to transition from pediatric to adult care. Consistent with guidelines, a transition clinic with ongoing mental health assessment was created, providing treatment to patients scoring in the moderate severity range or higher. In order to examine the effectiveness of our epilepsy transition clinic and the impact of mental health in transition-aged adolescents, baseline and one-year follow-up data were compared in 36 participants (M = 15.82 years, 24 males). Results showed that the majority of participants had improved or comparable mental health scores at follow-up. Furthermore, participants who met threshold for mental health treatment had significantly improved mental health (t = 3.19, p = 0.015), while those who did not showed worsened mental health (t =  − 2.50, p = 0.019). Looking specifically at mental health impact, those with worsened mental health showed significantly worsened quality of life (t = 3.35, p = 0.012). Furthermore, those without mental health issues showed improved transition skills (t =  − 3.86, p = 0.002), while those with mental health issues did not. Results suggest that the transition clinic is effective in helping transition-aged adolescents with their mental health. Additionally, findings suggest that addressing these mental health issues are essential to ensuring successful transitions and the best outcomes in these patients.
当患有癫痫的青少年准备从儿科护理过渡到成人护理时,心理健康问题变得尤其成问题。根据指导方针,建立了一个过渡性诊所,进行持续的心理健康评估,为评分在中度或更高严重程度范围内的患者提供治疗。为了检验我们的癫痫过渡诊所的有效性和对过渡年龄青少年心理健康的影响,我们比较了36名参与者(M = 15.82岁,24名男性)的基线和一年随访数据。结果显示,在随访中,大多数参与者的心理健康得分有所改善或相当。此外,达到心理健康治疗阈值的参与者心理健康状况显著改善(t = 3.19, p = 0.015),而未达到阈值的参与者心理健康状况恶化(t = - 2.50, p = 0.019)。具体来看心理健康影响,那些心理健康状况恶化的人的生活质量明显恶化(t = 3.35, p = 0.012)。此外,那些没有心理健康问题的人表现出改善的过渡技能(t = - 3.86, p = 0.002),而那些有心理健康问题的人则没有。结果表明,过渡性门诊对过渡性青少年心理健康的帮助是有效的。此外,研究结果表明,解决这些心理健康问题对于确保这些患者的成功过渡和最佳结果至关重要。
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引用次数: 0
Challenges in the Transition of Care Process for Patients with Dravet and Lennox–Gastaut Syndromes Dravet综合征和lenox - gastaut综合征患者护理过程转变中的挑战
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-09-11 DOI: 10.1055/s-0040-1716670
Cemal Karakas, R. Schultz, Jay R. Gavvala
Abstract Epileptic encephalopathies such as Dravet syndrome (DS) and Lennox–Gastaut syndrome (LGS) present unique challenges in the transition of care not only for the providers but also for the patients and families. Some of these challenges include the complexity of disease process, differences in medication management between children and adults, high incidence of comorbidities such as psychosocial issues, a lack of structured transition process from pediatric to adult care, and the lack of parental knowledge and reluctance to transition to an adult provider. Improving transition readiness and transfer of care are essential to long-term management and continuity of care. Studies show that patients/families who possess transition readiness skills have better health outcomes. Furthermore, participation in a structured transition intervention has been shown to improve transition readiness and utilization of ambulatory care in the adult setting. Reported benefits of implementation of transition planning include increased self-esteem, improved health literacy, fewer emergency room visits, decreased hospitalizations and comorbidities, and fewer school absences. Nevertheless, there is a lack of evidenced-based, family/patient-centered transition model of care. This review's primary goal is to provide an overview of challenges in the transition of care and recommendations for an ideal transition for patients with DS and LGS.
癫痫性脑病,如Dravet综合征(DS)和lenox - gastaut综合征(LGS)提出了独特的挑战,在护理的过渡,不仅为提供者,也为患者和家属。其中一些挑战包括疾病过程的复杂性,儿童和成人之间药物管理的差异,社会心理问题等合并症的高发,缺乏从儿科到成人护理的结构化过渡过程,以及父母缺乏知识和不愿过渡到成人提供者。改善过渡准备和转移护理对护理的长期管理和连续性至关重要。研究表明,拥有过渡准备技能的患者/家庭有更好的健康结果。此外,参与结构化的过渡干预已被证明可以改善成人环境中的过渡准备和门诊护理的利用。据报告,实施过渡规划的好处包括增强自尊、提高健康素养、减少急诊室就诊、减少住院和合并症以及减少缺勤。然而,缺乏以证据为基础的、以家庭/病人为中心的护理过渡模式。本综述的主要目的是概述退行性椎体滑移和LGS患者在护理过渡过程中面临的挑战,并为理想的过渡提供建议。
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引用次数: 0
Impact of Nonclinical Factors on Treatment Decisions: What Can and Cannot Be Done and Why? 非临床因素对治疗决策的影响:什么能做,什么不能做,为什么?
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-09-01 DOI: 10.1055/s-0040-1716486
Matthew T. Sweney
Abstract This clinical scenario describes a situation where drug-resistant focal epilepsy could have been treated with specific surgery, but a mixture of nonclinical factors led to a different management. The epilepsy started at the age of 6 years and the assessment for other treatment options by this team was done at the age of 12 years. Financial factors were important in the decisions that had to be made and effectively perhaps decisive.
这个临床场景描述了一种情况,耐药局灶性癫痫本可以通过特定的手术治疗,但非临床因素的混合导致不同的管理。癫痫开始于6岁,该团队对其他治疗方案的评估在12岁时完成。财政因素在必须作出的决定中是重要的,而且实际上可能是决定性的。
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引用次数: 1
Continued Gap in Seizure Frequency Documentation 扣押频率文件的持续差距
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-08-31 DOI: 10.1055/s-0040-1715461
Andrea Debs, S. Gedela, Anup D. Patel
Abstract Proper documentation during neurology clinic visits is essential. Medical providers that document precise and standardized findings aid other providers, nurses, and research personnel. The American Academy of Neurology (AAN) created standardized quality measures in order to improve delivery of care for patients with epilepsy, providers, and systems. In this article, we reviewed a total of 777 charts in order to find documentation on seizure frequency from the most recent clinical visit. Data was collected from electronic healthcare records. During initial chart review, the following information was noted: age, gender, seizure type(s), etiology type(s), provider (neurologist or epileptologist), whether seizure frequency was noted, and the reason for no documentation. The data review represented a sample of the epilepsy population seen at our institution. Of the 734 individuals, 475 patients had seizure frequency documented (65%). Two hundred and fifty-nine (259) people (35%) were missing seizure frequency data. For those individuals, we determined the reasoning behind why this data was not present in the chart note. Of those 259 charts, there were 65 (25%) charts missing seizure frequency, 161 (62%) charts that were vague, and 33 (13%) charts where seizure frequency could not be determined. Based on our findings, the documentation of seizure frequency is a gap in care.
在神经科门诊就诊时,适当的文件是必不可少的。记录精确和标准化结果的医疗提供者可以帮助其他提供者、护士和研究人员。美国神经病学学会(AAN)制定了标准化的质量措施,以改善对癫痫患者、提供者和系统的护理。在这篇文章中,我们回顾了总共777张图表,以便从最近的临床访问中找到癫痫发作频率的文件。数据从电子医疗记录中收集。在最初的病历回顾中,记录了以下信息:年龄、性别、发作类型、病因类型、提供者(神经科医生或癫痫科医生)、是否记录了发作频率以及没有记录的原因。数据回顾代表了在我们机构看到的癫痫人群的样本。在734名患者中,475名患者有癫痫发作频率记录(65%)。259人(35%)缺少癫痫发作频率数据。对于这些人,我们确定了为什么这些数据没有出现在图表说明中的原因。在这259张图表中,有65张(25%)图表缺少癫痫发作频率,161张(62%)图表含糊不清,33张(13%)图表无法确定癫痫发作频率。根据我们的发现,癫痫发作频率的记录是一个空白的护理。
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引用次数: 2
Ethical Issue as the Limiting Factor for Epilepsy Surgery 伦理问题是癫痫手术的限制因素
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-08-20 DOI: 10.1055/s-0040-1714355
S. Gedela, C. Korff
Abstract Epilepsy is one of the most common neurological disorders with almost one-third of these patients becoming intractable to medical treatments. For some of these patients, epilepsy surgery could be the best option. There are lot of disparities in caring of the epilepsy patients. There are multiple limitations in offering epilepsy surgery for the medically intractable epilepsy patients, resulting in almost 19 years gap from the diagnosis of intractable epilepsy to epilepsy surgery. These limitations range from patient or parental fear to lack of available resources. Sometimes we face an ethical issue being the limitation from doing the right thing for the patient. We want to share our experience with one of our patients with symptomatic medically intractable focal epilepsy from Rasmussen’s encephalitis who could not get the epilepsy surgery treatment because of an ethical issue.
癫痫是最常见的神经系统疾病之一,近三分之一的癫痫患者难以治疗。对其中一些患者来说,癫痫手术可能是最好的选择。在对癫痫患者的护理方面存在着很大的差异。对医学上难治性癫痫患者进行癫痫手术治疗存在诸多局限性,导致从难治性癫痫的诊断到癫痫手术治疗之间存在近19年的差距。这些限制包括从患者或家长的恐惧到缺乏可用资源。有时我们会面临伦理问题,不能为病人做正确的事。我们想与一位患有拉斯穆森脑炎的症状性难治性局灶性癫痫的患者分享我们的经验,他因为伦理问题而无法接受癫痫手术治疗。
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引用次数: 0
An Overview of Anxiety Disorders and Depression in Children with Epilepsy: A Literature Review 癫痫儿童焦虑障碍和抑郁的综述:文献综述
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-08-14 DOI: 10.1055/s-0040-1715566
O. Gökçen, M. Turgut
Abstract Comorbid psychiatric disorders in children with epilepsy have long been a subject of medical literature. Many studies conducted by pediatric neurologists, neurosurgeons, psychiatrists, and psychologists have revealed that psychiatric disorders, including anxiety disorders and depression, are frequently seen in children and adolescents with epilepsy. Due to various etiologies behind epilepsy, causes, manifestation, and treatment of anxiety and depression all have unique aspects. We think there are multiple reasons behind anxiety disorders and depression in children with epilepsy, varying from the physiological nature of the epilepsy itself to the environmental factors such as family, parenting, and social status. In this article, we aim to review the causes, risk factors, and management of anxiety disorders and depression in children with epilepsy.
癫痫患儿的共病性精神障碍一直是医学文献研究的课题。由儿科神经学家、神经外科医生、精神科医生和心理学家进行的许多研究表明,精神疾病,包括焦虑症和抑郁症,在患有癫痫的儿童和青少年中很常见。由于癫痫背后的各种病因,原因,表现和治疗焦虑和抑郁都有其独特的方面。我们认为癫痫患儿的焦虑和抑郁背后有多种原因,从癫痫本身的生理性质到环境因素,如家庭、父母和社会地位。在这篇文章中,我们的目的是回顾癫痫儿童焦虑障碍和抑郁的原因、危险因素和管理。
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引用次数: 1
Practical Ethical Approaches for Common Issues in Pediatric Epilepsy 儿科癫痫常见问题的实用伦理方法
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-08-13 DOI: 10.1055/s-0040-1715563
C. Lancaster
Abstract The aim of this commentary is to provide clinicians with the tools needed (or, at least, knowledge of where to find them) to navigate the often-turbulent seas of medical ethics. The cases described and questions asked in this issue are not only relevant to pediatric epilepsy but also typical of quandaries faced frequently by health care professionals (HCPs). By examining these cases and extrapolating the ethical questions raised, the clinician will find that there are several ethical approaches that can be taken and may lead to a variety of ways forward. However, by employing the ideas highlighted in this commentary, it is my hope that HCPs will be able to identify these various points of view, evaluate their options, and act in ways that are ethically justifiable.
本评论的目的是为临床医生提供所需的工具(或者,至少,在哪里可以找到它们的知识),以导航经常动荡的医学伦理海洋。本问题中所描述的病例和提出的问题不仅与儿童癫痫有关,而且也是卫生保健专业人员(HCPs)经常面临的典型困境。通过检查这些病例并推断所提出的伦理问题,临床医生会发现有几种可以采用的伦理方法,并可能导致各种各样的前进道路。然而,通过采用这篇评论中强调的观点,我希望医护人员能够识别这些不同的观点,评估他们的选择,并以道德上合理的方式行事。
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引用次数: 0
Ethical Issues in Pediatric Epilepsy 儿童癫痫的伦理问题
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-08-13 DOI: 10.1055/s-0040-1715565
E. Posner, C. Lancaster
Medicine frequently comes up against ethical dilemmas, for which there are no clear “right” answers. This special issue aims to highlight some of those occurring in pediatric epileptology and raise awareness of potential frameworks to aid clinicians. What readers may recognize through the papers presented is that despite the contributors coming from a wide geographical range, there are recurrent themes that appear throughout 21-century clinical practice. A child who may benefit from surgical interventionmaybe living in theUnited States, Spain, Italy, Romania, and so on, and similar discussion may be required involving health care professionals (HCPs), the patient, and patient advocates. Similar questions arise regardless of country: How much weight should be given to patients’ requests? Who ultimately decides on current treatment? If the patient cannot make a contribution, who should be their representative? Howdowebalance the “pros and cons” of a particular therapeutic regime? Is it ethical to try pediatric patients on drugs that have not been licensed for use in children? Despite the cultural pluralities in the countries represented, the same dilemmas emerge. This suggests that there is a need for an overarching understanding of medical ethics in a way that can be practically employed by the HCPs wherever they work. It would be nice to have a flowchart telling HCPs which “morally correct” action should be taken in each situation, but this unfortunately is not possible.What is possible, however, is that practitioners are equipped with knowledge about moral theories and ethical approaches that enable them to make ethically sound (and justifiable) decisions, which take into account cultural, social, religious, and legal pluralities. These types of considerations are vital for developing ethically justifiable decisions. It is by learning various approaches to medical ethics that the practitioner can navigate their field. The practice of medicine was, at least initially, considered to be an art. Although science has helped medicine develop therapies, diagnostic tests, and classification of diseases (for example), the importance of medical ethics demonstrates that the clinician still needs an ability to practice their art. The hypothetical questions listed above are unsurprisingly present in the papers included in this issue. There are also particular themes that emerge (again, regardless of geographical region), showing that there is a need for HCPs to be fully ethically equipped for their role in pediatric epileptology. A quick check of medicine legislation in many countries highlights the separation of licensing drugs for pediatric use and adult use. In this issue, Rose et al’s contribution on clinical trials and use of various epilepsy treatments in pediatric patients go some way to examining whether this is simply a regulatory issue or whether children may be thought of as “little adults”with regard to pharmacokinetics and pharmacodynamics, aski
医学经常遇到道德困境,对此没有明确的“正确”答案。本期特刊旨在强调儿童癫痫学中发生的一些问题,并提高对潜在框架的认识,以帮助临床医生。通过这些论文,读者可能会认识到,尽管贡献者来自广泛的地理范围,但在21世纪的临床实践中出现了反复出现的主题。可能受益于手术干预的儿童可能生活在美国、西班牙、意大利、罗马尼亚等地,类似的讨论可能需要涉及卫生保健专业人员(HCPs)、患者和患者倡导者。无论在哪个国家,都会出现类似的问题:对患者的要求应给予多大的重视?谁最终决定当前的治疗方法?如果病人不能供款,谁应该成为他们的代表?如何平衡特定治疗方案的“利弊”?让儿科患者尝试使用未经许可用于儿童的药物是否合乎道德?尽管所代表的国家文化多元,但同样的困境也出现了。这表明,有必要对医学伦理有一个总体的理解,以便医务人员无论在哪里工作都能实际运用。如果有一个流程图告诉医护人员在每种情况下应该采取哪些“道德正确”的行动,那就太好了,但不幸的是,这是不可能的。然而,有可能的是,从业者具备道德理论和伦理方法的知识,使他们能够做出合乎道德的(和合理的)决定,这些决定考虑到文化、社会、宗教和法律的多元性。这些类型的考虑对于制定合乎道德的决策至关重要。通过学习医学伦理的各种方法,从业者可以驾驭他们的领域。至少在最初,行医被认为是一门艺术。尽管科学帮助医学发展了治疗方法、诊断测试和疾病分类(例如),但医学伦理的重要性表明,临床医生仍然需要有能力实践他们的艺术。上面列出的假设性问题毫不奇怪地出现在本期的论文中。此外,还出现了一些特别的主题(同样,无论地理区域如何),表明有必要为卫生专业人员在儿童癫痫学中的作用提供充分的道德装备。对许多国家的药品立法进行快速检查就会发现,儿童用药和成人用药的许可是分开的。在本期中,Rose等人对临床试验和各种癫痫治疗在儿科患者中的应用的贡献在一定程度上探讨了这是否仅仅是一个监管问题,或者在药代动力学和药效学方面,儿童是否可以被认为是“小大人”,并询问是否没有必要对某些治疗进行儿科临床试验。Rose等人认为,“儿童”的法律意义和生理意义之间的冲突,使癫痫儿童的医疗处于某种不稳定的位置,在药理学和立法之间取得平衡。继续这个主题,温坦提供了有关德拉韦综合征的例子。斯立哌醇与丙戊酸钠和氯巴唑仑一起被证明对这种情况有效。然而,Diacomit(联合王国许可的施曲妥醇药物)的产品特性摘要指出,必须仔细监测其在幼儿中的使用,并且关于在12个月以下婴儿中使用施曲妥醇的数据有限。因此,临床医生在为非常年幼的儿童开处方时应谨慎行事。在文章的最后,温坦强调,这些孩子的父母必须随时了解可能的新治疗方法、疗效和不良事件。知情同意长期以来一直是医学伦理的基石,在指导家长和患者时至关重要。正如温坦指出的那样,医护人员意识到,对减轻症状的绝望可能会严重影响做出决定的自主权。
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引用次数: 0
At What Point Should We Discontinue Treatment in Super-Refractory Status Epilepticus? 超难治性癫痫持续状态在什么时候应该停止治疗?
IF 0.2 Q4 PEDIATRICS Pub Date : 2020-07-29 DOI: 10.1055/s-0040-1714389
A. Datta
Abstract This case report portrays the case of a child with super-refractory status epilepticus. The seizures were secondary to febrile infection-related epilepsy syndrome and the child required multiple anticonvulsants and eventually anesthetic infusions for several weeks. During the treatment, an ethical dilemma arose and was discussed by neurologists, intensivists, and family members.
摘要:本病例报告描述了一名患有超难治性癫痫持续状态的儿童。癫痫发作继发于发热性感染相关癫痫综合征,患儿需要服用多种抗惊厥药物,并最终持续数周注射麻醉剂。在治疗过程中,出现了一个道德困境,神经学家、重症监护医师和家庭成员对此进行了讨论。
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引用次数: 1
期刊
Journal of Pediatric Epilepsy
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