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欧洲 EADV 评估瘙痒严重程度和负担网络 (PruNet):关于结局工具的第一次会议。

European EADV network on assessment of severity and burden of Pruritus (PruNet): first meeting on outcome tools.

机构信息

Department of Dermatology, Competence Center for Chronic Pruritus, University Hospital of Münster, Münster, Germany.

Institute of Medical Informatics, University of Münster, Münster, Germany.

出版信息

J Eur Acad Dermatol Venereol. 2016 Jul;30(7):1144-7. doi: 10.1111/jdv.13296. Epub 2015 Sep 15.

Abstract

BACKGROUND

Chronic pruritus is a frequently occurring symptom of various dermatoses that causes a high burden and impaired quality of life. An effective anti pruritic therapy is important for the patient, but its effectiveness is difficult to evaluate. Diverse methods and interpretations of pruritic metrics are utilized in clinical trials and the daily clinical practice in different countries, resulting in difficulties comparing collected data.

METHODS

We founded a European Network on Assessment of Severity and Burden of Pruritus (PruNet) that is supported by the EADV. PruNet consists of 28 experts from 15 EU countries (21 dermatologists, 5 medical informaticists, 2 psychologists) and aims to unify the assessment of itch in routine dermatological care. Following a preliminary survey, a consensus conference was held in order to agree upon the prioritization of patient-reported outcome tools.

RESULTS

Through utilizing the Delphi method, it was agreed that tools for measuring itch intensity (ex. the visual analogue scale) and quality of life (ex. ItchyQoL) are of primary importance and should urgently be foremost validated.

CONCLUSION

The validation and harmonization of standards are needed for the improvement of quality care for patients suffering from pruritic dermatoses. This summer, the first validation studies in several EADV member countries already began.

摘要

背景

慢性瘙痒是各种皮肤病常发生的症状,会造成很大负担并降低生活质量。对于患者来说,有效的止痒疗法非常重要,但疗效评估却颇具难度。不同国家的临床试验和日常临床实践中使用了各种不同的瘙痒测量方法和标准,这导致收集到的数据难以进行比较。

方法

我们成立了一个由欧洲皮肤病学会(EADV)支持的欧洲瘙痒严重程度和负担评估网络(PruNet)。PruNet 由来自 15 个欧盟国家的 28 名专家组成(21 名皮肤科医生、5 名医学信息学家、2 名心理学家),旨在统一皮肤科常规护理中的瘙痒评估。在初步调查之后,我们召开了一次共识会议,以商定患者报告结局工具的优先级。

结果

通过使用德尔菲法,我们一致认为测量瘙痒强度的工具(例如视觉模拟量表)和生活质量工具(例如 ItchyQoL)非常重要,应尽快进行验证。

结论

需要对标准进行验证和协调,以改善患有瘙痒性皮肤病患者的护理质量。今年夏天,EADV 几个成员国已经开始了首批验证研究。

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