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肌萎缩侧索硬化症的症状管理与临终关怀

Symptom Management and End-of-Life Care in Amyotrophic Lateral Sclerosis.

作者信息

Jackson Carlayne E, McVey April L, Rudnicki Stacy, Dimachkie Mazen M, Barohn Richard J

机构信息

Department of Neurology, University of Texas Health Science Center, 8300 Floyd Curl Drive, Mail Code 7883, San Antonio, TX 78229-3900, USA.

Department of Neurology, University of Kansas Medical Center, 3901 Rainbow Boulevard, Mailstop 2012, Kansas City, KS 66160, USA.

出版信息

Neurol Clin. 2015 Nov;33(4):889-908. doi: 10.1016/j.ncl.2015.07.010.

DOI:10.1016/j.ncl.2015.07.010
PMID:26515628
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5031364/
Abstract

The number of available symptomatic treatments has markedly enhanced the care of patients with amyotrophic lateral sclerosis (ALS). Once thought to be untreatable, patients with ALS today clearly benefit from multidisciplinary care. The impact of such care on the disease course, including rate of progression and mortality, has surpassed the treatment effects commonly sought in clinical drug trials. Unfortunately, there are few randomized controlled trials of medications or interventions addressing symptom management. In this review, the authors provide the level of evidence, when available, for each intervention that is currently considered standard of care by consensus opinion.

摘要

可用的对症治疗方法数量显著增加,改善了肌萎缩侧索硬化症(ALS)患者的护理状况。ALS患者曾被认为无法治疗,如今显然受益于多学科护理。这种护理对疾病进程的影响,包括进展速度和死亡率,已超过了临床药物试验中通常追求的治疗效果。遗憾的是,针对症状管理的药物或干预措施的随机对照试验很少。在本综述中,作者提供了现有证据水平,这些证据针对目前经共识意见认定为标准护理的每种干预措施。

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本文引用的文献

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Depression and wish to die in a multicenter cohort of ALS patients.肌萎缩侧索硬化症(ALS)患者多中心队列中的抑郁与想死意愿
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Autonomic system and amyotrophic lateral sclerosis.自主神经系统与肌萎缩侧索硬化症
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A Multi-Center Cohort Study on Characteristics of Pain, Its Impact and Pharmacotherapeutic Management in Patients with ALS.一项关于肌萎缩侧索硬化症患者疼痛特征、其影响及药物治疗管理的多中心队列研究。
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Impact of the Chin-Down Posture on Temporal Measures of Patients With Dysphagia: A Pilot Study.低头姿势对吞咽困难患者时间测量指标的影响:一项初步研究。
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