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慢性自发性荨麻疹、血管性水肿和特应性皮炎的患者报告结局测量指标。

Patient-Reported Outcome Measures in Chronic Spontaneous Urticaria, Angioedema, and Atopic Dermatitis.

机构信息

Division of Rheumatology, Allergy and Immunology, Department of Internal Medicine, University of Cincinnati, Cincinnati, Ohio.

Otto-von-Guericke-Universität Magdeburg, Institute of Social Medicine and Health Systems Research (ISMHSR), Magdeburg, Germany.

出版信息

J Allergy Clin Immunol Pract. 2024 Oct;12(10):2583-2590. doi: 10.1016/j.jaip.2024.08.021. Epub 2024 Aug 19.

Abstract

Reducing the burden of disease for patients and families requires being able to measure health status changes related to disease severity, control, and response to treatment over time. Patient-reported outcomes are patient perceptions of their health status. Such perceptions are critical to decision making. Some patient-reported outcome measures (PROMs) are extensive and often intended to be used only for detailed research assessments. Many PROMs, however, form critical components of valid, reliable, and responsive assessments in clinical research and routine clinical practice. The smallest score change in a PROM that would lead to different decision making by patients is called the minimally important difference. Using PROMs may also offer advantages over general questions or unvalidated tools. With the innovation of technology, the ability to chronicle disease symptoms using communication technology (mobile phone applications) has become increasingly available. Collection of real-world data in this capacity will be very useful for identifying more precise phenotypes/endotypes necessary for investigation of tailored therapies for chronic spontaneous and inducible urticaria, angioedema, and atopic dermatitis. Here, we provide an overview of PROMs that have been developed for the assessment of disease severity, control, and quality of life and that have been validated for the use of adults and children with these skin disorders.

摘要

为患者和家庭减轻疾病负担,需要能够衡量与疾病严重程度、控制和治疗反应相关的健康状况变化。患者报告的结果是患者对其健康状况的感知。这些看法对决策至关重要。一些患者报告的结果测量(PROM)非常广泛,通常仅用于详细的研究评估。然而,许多 PROM 是临床研究和常规临床实践中有效、可靠和敏感评估的关键组成部分。PROM 中导致患者做出不同决策的最小得分变化称为最小有意义差异。使用 PROM 也可能比一般问题或未经验证的工具具有优势。随着技术的创新,使用通信技术(手机应用程序)记录疾病症状的能力变得越来越普遍。以这种方式收集真实世界的数据对于确定更精确的表型/内型将非常有用,这对于研究慢性自发性和诱导性荨麻疹、血管性水肿和特应性皮炎的靶向治疗是必要的。在这里,我们提供了为评估这些皮肤疾病的严重程度、控制和生活质量而开发的、并已针对成人和儿童使用进行验证的 PROM 的概述。

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