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多发性硬化症患者的预后信息:不可能还是必然?

Prognostic information for people with MS: Impossible or inevitable?

机构信息

MS Day Hospital and Institute of Neuroimmunology and Multiple Sclerosis, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Division of Neuroinflammation and Neurodegeneration, Department of Medicine, Imperial College London, London, UK.

出版信息

Mult Scler. 2020 Jun;26(7):771-773. doi: 10.1177/1352458518807101. Epub 2018 Oct 16.

DOI:10.1177/1352458518807101
PMID:30325713
Abstract

Delivering prognostic information is a challenging issue in medicine and has been largely neglected in the past. A major reason has been a suspected nocebo effect of pessimistic estimates, although this is largely unproven. Among people with multiple sclerosis (MS), there is a strong unmet need to receive long-term prognostic information. This viewpoint discusses reasons for this blind spot in physicians' attitude, foremost among which is the uncertainty of prognostic estimates. Possible strategies to move forward include tools to identify matching patients from large well-defined databases, to deliver an evidence-based individualized estimate of long-term prognosis, and its confidence interval, in a clinical setting.

摘要

提供预后信息在医学领域是一个具有挑战性的问题,在过去很大程度上被忽视了。一个主要原因是人们怀疑悲观估计会产生负面影响,但这在很大程度上还没有得到证实。在多发性硬化症(MS)患者中,他们强烈需要获得长期预后信息。本文观点讨论了医生态度中存在这一盲点的原因,其中首要原因是预后估计的不确定性。可能的前进策略包括从大型明确定义的数据库中识别匹配患者的工具,以便在临床环境中提供基于证据的长期预后个体化估计及其置信区间。

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1
Prognostic information for people with MS: Impossible or inevitable?多发性硬化症患者的预后信息:不可能还是必然?
Mult Scler. 2020 Jun;26(7):771-773. doi: 10.1177/1352458518807101. Epub 2018 Oct 16.
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Suspected multiple sclerosis: how much to tell the patient?疑似多发性硬化症:该告知患者多少信息?
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Care ethics for guiding the process of multiple sclerosis diagnosis.指导多发性硬化症诊断过程的关怀伦理学
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