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Understanding Parkinson Disease: A Complex and Multifaceted Illness. 了解帕金森病:一种复杂和多方面的疾病。
Apoorva Gopalakrishna, S. Alexander
Parkinson disease is an incredibly complex and multifaceted illness affecting millions of people in the United States. Parkinson disease is characterized by progressive dopaminergic neuronal dysfunction and loss, leading to debilitating motor, cognitive, and behavioral symptoms. Parkinson disease is an enigmatic illness that is still extensively researched today to search for a better understanding of the disease, develop therapeutic interventions to halt or slow progression of the disease, and optimize patient outcomes. This article aims to examine in detail the normal function of the basal ganglia and dopaminergic neurons in the central nervous system, the etiology and pathophysiology of Parkinson disease, related signs and symptoms, current treatment, and finally, the profound impact of understanding the disease on nursing care.
帕金森氏症是一种极其复杂和多方面的疾病,影响着美国数百万人。帕金森病的特点是进行性多巴胺能神经元功能障碍和丧失,导致运动、认知和行为症状衰弱。帕金森病是一种神秘的疾病,目前仍在广泛研究,以寻求更好地了解这种疾病,开发治疗干预措施来阻止或减缓疾病的进展,并优化患者的预后。本文旨在详细探讨中枢神经系统基底神经节和多巴胺能神经元的正常功能,帕金森病的病因和病理生理,相关体征和症状,目前的治疗方法,最后,了解疾病对护理的深远影响。
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引用次数: 35
How will we manage? 我们将如何管理?
V. Carroll
Managed care has been an inescapable part of healthcare for decades. We encounter it collectively as healthcare providers and individually as healthcare consumers. The ways in which managed care plans pay for services, as well as the services for which they pay, underpin the provision of almost all healthcare in the United States. Managed care options and reimbursement are critical points in the discussion of healthcare reform. Tiered copayments for prescription drugs have long been a part of insurers’ cost containment strategies, with patients paying fixed amounts from their own funds when a prescription is filled; the dollar amounts vary depending on the cost of a particular drug and whether a less expensiveVgenericValternative exists. Generic drugs were nearly always less expensive for the individual consumer because competition from generic drugs ‘‘is the most effective way of slowing the spiraling cost of pharmaceuticals’’ (AARP’s Brief Amicus Curiae, 2010). Drug copayments were traditionally divided into three tiers; copayment costs were less for Tier I drugs and more expensive for Tier 3 drugs. The incentive to choose a generic form of a drug, when available, was lower cost. Now, however, the growing number of biologic drugs available to treat cancer, immune disorders, and a variety of chronic illnessesVincluding multiple sclerosis (MS)Vhas caused some insurers to create a fourth copayment tier. This fourth tier has been introduced for drugs that are particularly expensive, and patients are being asked to pay a significantly larger ‘‘share’’ of the cost, often as much as 20%Y30% of the fixed cost of these agents. Included in the Tier 4 group are drugs like the tumor necrosis factor blocker etanercept, trastuzumab (Herceptin), the interferons, and glatiramer acetate (Copaxane). Patients who require Tier 4 drugs are likely to incur ‘‘Iout-of-pocket (OOP) expenses which far exceed what their budgets can bear’’ (Lee & Emmanuel, 2008, p. 333). Newer oral biologic agents will have no generic equivalent, will be patent protected for many years to come, and will certainly be classified as Tier 4 agents in terms of copayments. What does this mean for our patients? The evidence tells us that as OOP costs rise, adherence to therapy falls. A study reported in the Journal of Managed Care Pharmacy (Gleason et al., 2009) indicated that OOP expenses greater than $200 for MS medication were associated with increased prescription abandonment; in other words, patients simply stopped having their prescriptions filled. Their analysis of administrative claims over a 2-year period found that individuals were 8% more likely to stop therapy for every $10 increase in OOP drug costs. More than 400,000 individuals in the United States have been diagnosed with MS, and an additional 10,000+ new cases are identified annually. Adherence to current biologic treatment regimens is complicated by injection anxiety, adverse reactions to the injections, real and/or perceived l
几十年来,管理式医疗一直是医疗保健不可避免的一部分。我们作为医疗保健提供者和个人作为医疗保健消费者共同遇到它。管理式医疗计划支付服务费用的方式,以及他们支付的服务,是美国几乎所有医疗保健服务的基础。管理医疗方案和报销是讨论医疗改革的关键点。长期以来,处方药的分层共付一直是保险公司成本控制策略的一部分,当处方被填满时,患者从自己的资金中支付固定金额;金额取决于特定药物的成本以及是否存在更便宜的非专利替代品。对于个人消费者来说,仿制药几乎总是更便宜,因为来自仿制药的竞争“是减缓药品成本螺旋式上升的最有效方式”(AARP的法庭之友简报,2010)。药品共同支付传统上分为三个层次;一级药物的共付费用较低,三级药物的共付费用较高。当有仿制药时,选择仿制药的动机是更低的成本。然而现在,用于治疗癌症、免疫系统疾病和多种慢性疾病(包括多发性硬化症(MS))的生物药物越来越多,这促使一些保险公司创建了第四个共同支付级别。第四层是针对那些特别昂贵的药物,病人被要求支付更大的费用“份额”,通常高达这些药物固定成本的20%至30%。第4级包括肿瘤坏死因子阻滞剂依那西普、曲妥珠单抗(赫赛汀)、干扰素和醋酸格拉替默(Copaxane)等药物。需要第4级药物的患者可能会产生“自费(OOP)费用,远远超过他们的预算可以承受”(Lee & Emmanuel, 2008, p. 333)。较新的口服生物制剂将没有仿制药,将在未来许多年受到专利保护,并且在共同支付方面肯定会被归类为第4级制剂。这对我们的病人意味着什么?证据告诉我们,随着OOP成本的上升,对治疗的依从性下降。《管理护理药学杂志》(Journal of Managed Care Pharmacy, Gleason et al., 2009)报道的一项研究表明,MS药物的OOP费用超过200美元与处方放弃增加有关;换句话说,病人只是停止了他们的处方。他们对两年时间内行政索赔的分析发现,面向对象的药物费用每增加10美元,个体停止治疗的可能性就增加8%。在美国,有超过40万人被诊断患有多发性硬化症,每年还有1万多例新病例被确诊。注射焦虑、注射不良反应、实际和/或感知的疗效不足以及成本,使当前生物治疗方案的依从性变得复杂。在治疗的前6个月,停药或放弃率在9%至20%之间(Lipsy, 2010)。随着较新的口服生物制剂进入治疗领域和市场,患者将能够选择一种不需要注射的药物,这对维持治疗的依从性具有巨大的积极作用。不利的一面是,这些药物将在许多年内没有通用(更便宜)的形式,并将以第4级共同支付进入市场。作为神经科学的护士,我们如何在这一正在展开的经济场景中发挥作用?我们可以倡导更好、更具成本效益的治疗。我们可以争取改变食品和药物管理局批准仿制药配方的程序。我们可以游说修改分层共付结构。我们可以教病人和家属以促进最佳结果的方式照顾自己。作为医疗保健提供者和个人消费者,我们可以积极参与更广泛的讨论,讨论我们将如何应对总体上不断上涨的医疗保健成本。套用黄金法则,我们应该“以我们希望被管理的方式来管理他人”。
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引用次数: 2
Ripples from a stone skipping across the lake: a narrative approach to the meaning of Huntington's disease. 石头在湖面上荡起的涟漪:对亨廷顿舞蹈症意义的叙述方法。
R. Schwartz
Huntington's disease (HD) is a progressive neurogenetic disorder that has a 50% inheritance rate. The ability to have 100% confirmation of the illness became a reality with the discovery of the gene in 1993. The effect of confirmatory testing and the issues faced by the individual and the family facing diagnosis have not been addressed. The purpose of this research study was to explore the meaning of being diagnosed with HD using narrative inquiry. Ten participants, during the first year of diagnosis, were asked to tell their story of what it meant to be diagnosed with HD. A holistic-content approach was used for data analysis. An integrated narrative, "The Story of HD: Ripples From a Stone Skipping Across the Lake," was created from the stories. The stories were analyzed for plot, predicaments, protagonist, and antagonist. The predicaments of "discovering the existence of HD," "confirming the diagnosis of HD," "revealing the diagnosis to others," and "experiencing the reverberations of HD" served as the main chapters that formed the structure of the stories. Each predicament contains a set of themes that function as subheadings for the chapters. In the final chapter or epilogue, participants were asked to reflect on the meaning of being diagnosed with HD. The psychological impact of receiving a positive genetic diagnosis has implications for patients and their extended families. Nurses should develop their understanding of the role of genetics in healthcare today. Clinical evaluations of the effectiveness of treatments and assessment for changes in mood, behavior, and motor function are an essential part of nursing care. Advocacy and supportive roles must be incorporated into the patient visit. Patient education material on home safety, nutrition, medication management, and general health practices should be provided during the outpatient visits. Through the development of a more comprehensive role, the nurse can assist patients and families in finding the personal meaning of being diagnosed.
亨廷顿舞蹈病(HD)是一种进行性神经遗传疾病,遗传率为50%。随着1993年该基因的发现,100%确诊该疾病的能力成为现实。确诊性检测的效果以及个人和家庭面对诊断所面临的问题尚未得到解决。本研究的目的是用叙事探究的方法探讨被诊断为HD的意义。在确诊的第一年,10名参与者被要求讲述他们被诊断为HD意味着什么。采用整体内容方法进行数据分析。一个完整的故事,“HD的故事:石头跳湖的涟漪”,是由这些故事创造的。对这些故事的情节、困境、主角和对手进行了分析。“发现HD的存在”、“确认HD的诊断”、“向他人透露诊断结果”、“体验HD的反响”等困境是构成故事结构的主要章节。每个困境都包含一组主题,作为章节的副标题。在最后一章或结束语中,参与者被要求反思被诊断患有HD的意义。接受阳性基因诊断的心理影响对患者和他们的大家庭都有影响。护士应该发展他们对遗传学在当今医疗保健中的作用的理解。对治疗效果的临床评估以及对情绪、行为和运动功能变化的评估是护理的重要组成部分。倡导和支持的作用必须纳入病人的访问。在门诊期间,应向患者提供有关家庭安全、营养、药物管理和一般健康做法的教育材料。通过更全面的角色发展,护士可以帮助患者和家属找到被诊断的个人意义。
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引用次数: 6
Insight and imagination. 洞察力和想象力。
V. Carroll
How are humans different from other animals? What unique characteristics set us apart from other mammals? Language? Many other mammalsV dolphins, chimps, dogsVcommunicate in meaningful ways with each other. Tools? Again, many other mammals use tools in their every day lives. Emotions? We observe behaviors in other mammals that appear similar to human emotion. The Public Broadcasting System recently aired a seriesVBThe Human Spark[Vthat examines these questions. In the three-part series, host Alan Alda joins neuroscientists, archeologists, and primatologists as they try to explain the nature of Bhuman uniqueness.[Using state-of-the-art, high-tech imaging techniques as well as low-tech but scientifically sound laboratory studies of primates, dogs, and human children, scientists examine the ways in which we are similar and those in which we differ. Some of the early evidence of human uniqueness exists in the cave paintings found in southern France. Thirty thousand years ago, our Neanderthal predecessors created extraordinary art that demonstrates imagination, representational thinking, and perhaps a sense of spirituality that we share. Archeological evidence indicates that the Neanderthals lived cooperatively within some sort of social network. However, the Neanderthal line did not survive, leading scientists to ask what really makes us different. Brain size alone? Spoken language or other means of social communication? Better cognitive sequencing? Alda observed the chimps and participated in experiments with them; he and the researchers studying these primates observed the continuity and discontinuity between their skills and ours. Chimps Bmake[ tools and use them efficiently, but they do not save the tools for future, repeated use as we do. Chimps live in social networks that include empathy and cooperation, but these traits are limitedVfor example, sharing food rewards occurs rarely despite nonverbal cues from others in the network. They do not seem to attend to the concerns of others in the group; social understanding is limited. The story of the FOXP2 gene may explain how we made the neurological Bjump[ that explains our uniqueness. Human cognition and abstract thought rely on language. In 1995, Vargha-Khadem et al. published an article that investigated a familial language disorder, a verbal apraxia, linked to a bilateral reduction in the size of affected individuals’ caudate nucleus. Six years later, other researchers announced that they had linked a mutation in a single gene to this language disorder. Named FOXP2, this gene contains a forkhead domain that facilitates transcription fromDNA to RNA. Human FOXP2 differs from chimp FOXP2 in two amino acids; these mutations occurred between 10,000 and 100,000 years ago and have been critical for the development of human speech and the evolution of languageVcritical components of human uniqueness. Language and speech provide us with representational thinking and the ability to conceptualize what ot
人类和其他动物有什么不同?是什么独特的特征使我们有别于其他哺乳动物?语言吗?许多其他哺乳动物,如海豚、黑猩猩、狗,彼此之间都以有意义的方式交流。工具吗?同样,许多其他哺乳动物在日常生活中也使用工具。情绪吗?我们观察到其他哺乳动物的行为似乎与人类的情感相似。公共广播系统最近播出了一个系列节目《人类火花》,探讨了这些问题。在这个由三部分组成的系列节目中,主持人艾伦·阿尔达与神经科学家、考古学家和灵长类动物学家一起,试图解释人类独特性的本质。[利用最先进的高科技成像技术,以及对灵长类动物、狗和人类儿童进行的低技术但科学合理的实验室研究,科学家们研究了我们的相似之处和不同之处。人类独特性的一些早期证据存在于法国南部发现的洞穴壁画中。三万年前,我们的尼安德特人祖先创造了非凡的艺术,展示了想象力、具象思维,也许还有我们共有的一种灵性。考古证据表明,尼安德特人在某种社会网络中合作生活。然而,尼安德特人并没有存活下来,这让科学家们开始思考,到底是什么让我们与众不同。仅仅是大脑的大小?口语或其他社会交流方式?更好的认知排序?阿尔达观察黑猩猩,并和它们一起做实验;他和研究这些灵长类动物的研究人员观察到它们的技能和我们的技能之间的连续性和不连续性。黑猩猩会制造工具并有效地使用它们,但它们不会像我们一样把工具保存起来以备将来反复使用。黑猩猩生活在包括同情和合作在内的社会网络中,但这些特征是有限的——例如,尽管网络中其他黑猩猩发出了非语言暗示,但它们很少分享食物奖励。他们似乎不关心群体中其他人的关心;社会理解是有限的。FOXP2基因的故事或许可以解释我们是如何产生神经上的Bjump,从而解释我们的独特性。人类的认知和抽象思维依赖于语言。1995年,varga - khadem等人发表了一篇文章,研究了一种家族性语言障碍,一种语言失用症,与受影响个体的双侧尾状核大小减少有关。六年后,其他研究人员宣布,他们已经将一个基因突变与这种语言障碍联系起来。这个基因被命名为FOXP2,它包含一个叉头结构域,可以促进从dna到RNA的转录。人类的FOXP2与黑猩猩的FOXP2在两个氨基酸上不同;这些突变发生在1万到10万年前,对人类语言的发展和语言的进化至关重要,而语言是人类独特性的关键组成部分。语言和言语为我们提供了表征思维和将他人的想法概念化的能力。最后,阿尔达和神经科学家利用高科技成像技术证明,人类在无所事事的时候可能是最有创造力的,在不积极思考的时候,我们最有能力挖掘意向性。我们能够在别人的生活中思考自己,能够从别人的角度考虑问题。我们预测别人对某一特定事件、经历或想法的看法。即使是很小的孩子也会注意别人的意图,并做出相应的行为。所有这些发现对我们这些神经科学护士意味着什么?我们的许多病人都经历了口语交流能力的变化。如果我们相信这种能力使我们独一无二,那么我们就需要帮助他们弥补功能障碍。我们需要寻找方法来支持他们独特的损失和剩余的技能。我们需要利用自己对人类行为、合作和同理心的洞察,尽可能提供最好的护理。作为神经科学护理人员,我们是有意识的护理提供者,会考虑他人的担忧。我们也可以利用我们所有的高科技,科学的复杂知识和设备来帮助我们的病人和他们的家人了解和应对神经功能障碍。我们可以成为火花!
{"title":"Insight and imagination.","authors":"V. Carroll","doi":"10.1097/jnn.0b013e3181da4131","DOIUrl":"https://doi.org/10.1097/jnn.0b013e3181da4131","url":null,"abstract":"How are humans different from other animals? What unique characteristics set us apart from other mammals? Language? Many other mammalsV dolphins, chimps, dogsVcommunicate in meaningful ways with each other. Tools? Again, many other mammals use tools in their every day lives. Emotions? We observe behaviors in other mammals that appear similar to human emotion. The Public Broadcasting System recently aired a seriesVBThe Human Spark[Vthat examines these questions. In the three-part series, host Alan Alda joins neuroscientists, archeologists, and primatologists as they try to explain the nature of Bhuman uniqueness.[Using state-of-the-art, high-tech imaging techniques as well as low-tech but scientifically sound laboratory studies of primates, dogs, and human children, scientists examine the ways in which we are similar and those in which we differ. Some of the early evidence of human uniqueness exists in the cave paintings found in southern France. Thirty thousand years ago, our Neanderthal predecessors created extraordinary art that demonstrates imagination, representational thinking, and perhaps a sense of spirituality that we share. Archeological evidence indicates that the Neanderthals lived cooperatively within some sort of social network. However, the Neanderthal line did not survive, leading scientists to ask what really makes us different. Brain size alone? Spoken language or other means of social communication? Better cognitive sequencing? Alda observed the chimps and participated in experiments with them; he and the researchers studying these primates observed the continuity and discontinuity between their skills and ours. Chimps Bmake[ tools and use them efficiently, but they do not save the tools for future, repeated use as we do. Chimps live in social networks that include empathy and cooperation, but these traits are limitedVfor example, sharing food rewards occurs rarely despite nonverbal cues from others in the network. They do not seem to attend to the concerns of others in the group; social understanding is limited. The story of the FOXP2 gene may explain how we made the neurological Bjump[ that explains our uniqueness. Human cognition and abstract thought rely on language. In 1995, Vargha-Khadem et al. published an article that investigated a familial language disorder, a verbal apraxia, linked to a bilateral reduction in the size of affected individuals’ caudate nucleus. Six years later, other researchers announced that they had linked a mutation in a single gene to this language disorder. Named FOXP2, this gene contains a forkhead domain that facilitates transcription fromDNA to RNA. Human FOXP2 differs from chimp FOXP2 in two amino acids; these mutations occurred between 10,000 and 100,000 years ago and have been critical for the development of human speech and the evolution of languageVcritical components of human uniqueness. Language and speech provide us with representational thinking and the ability to conceptualize what ot","PeriodicalId":94240,"journal":{"name":"The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses","volume":null,"pages":null},"PeriodicalIF":0.0,"publicationDate":"2010-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"73825072","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
"Once upon a time..."--narrative in nursing. “从前……”——护理叙事。
V. Carroll
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引用次数: 5
Leading by example...and with evidence. 以身作则……还有证据。
V. Carroll
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引用次数: 0
Research and quality improvement activities: when is institutional review board review needed? 研究和质量改进活动:什么时候需要机构审查委员会的审查?
M. McNett, K. Lawry
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引用次数: 9
Oh, nurse, where art thou? 噢,奶妈,你在哪儿?
V. Carroll
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引用次数: 0
Healthcare reform--the time is now. 医疗改革——现在是时候了。
V. Carroll
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引用次数: 0
DBS: uncharted territory--a nurse's perspective. 脑起搏器:未知领域——护士的视角。
Beka Serdans
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引用次数: 1
期刊
The Journal of neuroscience nursing : journal of the American Association of Neuroscience Nurses
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