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关于更好地管理特发性肺纤维化的指南还是指导意见?

Guidelines or guidance for better idiopathic pulmonary fibrosis management?

作者信息

Behr Jürgen

机构信息

Department of Internal Medicine V University of Munich and Asklepios Clinic München-Gauting, Comprehensive Pneumology Center Munich, Member of the German Centre for Lung Research, München, Germany.

出版信息

BMC Med. 2016 Feb 10;14:24. doi: 10.1186/s12916-016-0567-9.

Abstract

Idiopathic pulmonary fibrosis (IPF) is a rare fibrotic interstitial lung disease with a relentlessly progressive course and fatal outcome. Guidelines summarizing the current evidence and providing evidence-based recommendations for the treatment of rare diseases such as IPF are important since individual physicians often have limited experience. Nevertheless, the available evidence is often scarce and, therefore, evidence-based recommendations are prone to being vague or with low confidence, thus creating uncertainty instead of guidance. Moreover, the effect of guidelines themselves on clinical practice has not been sufficiently evaluated. On the other hand, expert opinion may be biased and lead to the misinterpretation of evidence, resulting in misleading recommendations and a potential harm to patients. This editorial focuses on the advantages and disadvantages of evidence-based guidelines and professional experience in the context of a rare disease such as IPF and tries to assess the optimum combination of both approaches.Please see related commentary articles: http://dx.doi.org/10.1186/s12916-016-0562-1 and http://dx.doi.org/10.1186/s12916-016-0563-0.

摘要

特发性肺纤维化(IPF)是一种罕见的纤维化间质性肺疾病,病程呈进行性发展且预后不良。对于IPF这类罕见病,总结现有证据并提供基于证据的治疗建议的指南很重要,因为个体医生的经验往往有限。然而,现有证据通常很少,因此基于证据的建议往往含糊不清或可信度较低,从而产生不确定性而非指导性。此外,指南本身对临床实践的影响尚未得到充分评估。另一方面,专家意见可能存在偏差,导致对证据的错误解读,从而产生误导性建议并可能对患者造成伤害。本社论重点探讨在IPF这类罕见病背景下基于证据的指南和专业经验的优缺点,并试图评估这两种方法的最佳结合方式。请参阅相关评论文章:http://dx.doi.org/10.1186/s12916-016-0562-1和http://dx.doi.org/10.1186/s12916-016-0563-0。

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Managing diagnostic procedures in idiopathic pulmonary fibrosis.特发性肺纤维化的诊断程序管理。
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