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本文引用的文献

1
A multidisciplinary clinic approach improves survival in ALS: a comparative study of ALS in Ireland and Northern Ireland.多学科诊所方法可提高 ALS 生存率:爱尔兰和北爱尔兰 ALS 的对比研究。
J Neurol Neurosurg Psychiatry. 2015 May;86(5):496-501. doi: 10.1136/jnnp-2014-309601. Epub 2014 Dec 30.
2
The natural history of motor neuron disease: assessing the impact of specialist care.运动神经元病的自然史:评估专科护理的影响。
Amyotroph Lateral Scler Frontotemporal Degener. 2013 Jan;14(1):13-9. doi: 10.3109/17482968.2012.690419. Epub 2012 May 29.
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Clinical diagnosis and management of amyotrophic lateral sclerosis.肌萎缩侧索硬化症的临床诊断与管理。
Nat Rev Neurol. 2011 Oct 11;7(11):639-49. doi: 10.1038/nrneurol.2011.153.
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EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)--revised report of an EFNS task force.欧洲神经病学会联合会关于肌萎缩侧索硬化症(MALS)临床管理的指南——EFNS 工作组的修订报告。
Eur J Neurol. 2012 Mar;19(3):360-75. doi: 10.1111/j.1468-1331.2011.03501.x. Epub 2011 Sep 14.
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The natural history of ALS is changing: improved survival.肌萎缩侧索硬化症的自然病程正在改变:生存率提高。
Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):324-31. doi: 10.3109/17482960903009054.
6
Prognostic factors in ALS: A critical review.肌萎缩侧索硬化症的预后因素:一项批判性综述。
Amyotroph Lateral Scler. 2009 Oct-Dec;10(5-6):310-23. doi: 10.3109/17482960802566824.
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Practice parameter update: the care of the patient with amyotrophic lateral sclerosis: multidisciplinary care, symptom management, and cognitive/behavioral impairment (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology.实践参数更新:肌萎缩侧索硬化症患者的护理:多学科护理、症状管理及认知/行为障碍(循证综述):美国神经病学学会质量标准小组委员会报告
Neurology. 2009 Oct 13;73(15):1227-33. doi: 10.1212/WNL.0b013e3181bc01a4.
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The amyotrophic lateral sclerosis center: a model of multidisciplinary management.肌萎缩侧索硬化症中心:多学科管理模式
Phys Med Rehabil Clin N Am. 2008 Aug;19(3):619-31, xi. doi: 10.1016/j.pmr.2008.04.004.
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ALS multidisciplinary clinic and survival. Results from a population-based study in Southern Italy.肌萎缩侧索硬化症多学科诊所与生存率。意大利南部一项基于人群的研究结果。
J Neurol. 2007 Aug;254(8):1107-12. doi: 10.1007/s00415-006-0401-y. Epub 2007 Apr 13.
10
Effect of referral bias on assessing survival in ALS.转诊偏倚对评估肌萎缩侧索硬化症生存率的影响。
Neurology. 2007 Feb 20;68(8):600-2. doi: 10.1212/01.wnl.0000254501.58158.e7.

西班牙肌萎缩侧索硬化症多学科护理的生存获益:与无创机械通气的关联

Survival benefit of multidisciplinary care in amyotrophic lateral sclerosis in Spain: association with noninvasive mechanical ventilation.

作者信息

Paipa Andres Julian, Povedano Monica, Barcelo Antonia, Domínguez Raul, Saez Marc, Turon Joana, Prats Enric, Farrero Eva, Virgili Nuria, Martínez Juan Antonio, Corbella Xavier

机构信息

Neurology Department, IDIBELL-Hospital de Bellvitge, Hospitalet de Llobregat, Barcelona, Spain.

Research Group on Statistics, Econometrics and Health (GRECS), University of Girona, Girona, Spain.

出版信息

J Multidiscip Healthc. 2019 Jun 19;12:465-470. doi: 10.2147/JMDH.S205313. eCollection 2019.

DOI:10.2147/JMDH.S205313
PMID:31354285
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6590410/
Abstract

PURPOSE

Multidisciplinary care has become the preferred model of care for patients with amyotrophic lateral sclerosis (ALS). It is assumed that the sum of interventions associated with this approach has a positive effect on survival. The objective of the study was to evaluate the impact of a multidisciplinary care approach on the survival of patients with ALS.

PATIENTS AND METHODS

We performed a retrospective review of prospectively collected data in a tertiary referral center in Spain. Participants were patients with definite or probable ALS managed in a multidisciplinary care program. We compared demographic and survival data of patients with definite or probable ALS treated in a referral center without and with implementation of a multidisciplinary care program. We performed time-dependent multivariate survival analysis of the use of noninvasive mechanical ventilation (NIMV) and gastrostomy.

RESULTS

We evaluated 398 consecutive patients, of whom 54 were treated by a general neurologist and 344 were treated in the multidisciplinary care clinic. Patients receiving multidisciplinary care were older (62 vs 58 years), tended to have bulbar onset disease (30% vs 17.7%), and were more likely to receive riluzole (88.7% vs 29.6%, <0.01), NIMV (48.8% vs 29.6%, >0.001), and nutrition via gastrostomy (32.3% vs 3.7%, <0.01). Kaplan-Meier analysis showed a 6-month increase in survival (log-rank, 16.03, <0.001). Application of the Andersen-Gill model showed that the variables associated with reduced mortality were reduced time to NIMV and gastrostomy and the duration of both, thus reflecting compliance.

CONCLUSIONS

Multidisciplinary care increased the survival of ALS patients in our study population. Timely use of respiratory support and gastrostomy are fundamental aspects of this benefit.

摘要

目的

多学科护理已成为肌萎缩侧索硬化症(ALS)患者首选的护理模式。人们认为,与这种方法相关的一系列干预措施对生存率有积极影响。本研究的目的是评估多学科护理方法对ALS患者生存率的影响。

患者与方法

我们对西班牙一家三级转诊中心前瞻性收集的数据进行了回顾性分析。参与者是在多学科护理项目中接受治疗的确诊或疑似ALS患者。我们比较了在未实施和实施多学科护理项目的转诊中心接受治疗的确诊或疑似ALS患者的人口统计学和生存数据。我们对无创机械通气(NIMV)和胃造口术的使用进行了时间依赖性多变量生存分析。

结果

我们评估了398例连续患者,其中54例由普通神经科医生治疗,344例在多学科护理诊所接受治疗。接受多学科护理的患者年龄较大(62岁对58岁),往往患有延髓起病型疾病(30%对17.7%),更有可能接受利鲁唑治疗(88.7%对29.6%,<0.01)、NIMV(48.8%对29.6%,>0.001)以及通过胃造口术进行营养支持(32.3%对3.7%,<0.01)。Kaplan-Meier分析显示生存期延长了6个月(对数秩检验,16.03,<0.001)。Andersen-Gill模型的应用表明,与死亡率降低相关的变量是NIMV和胃造口术的使用时间缩短以及两者的持续时间,从而反映了依从性。

结论

在我们的研究人群中,多学科护理提高了ALS患者的生存率。及时使用呼吸支持和胃造口术是这一益处的基本方面。