医学
血管性水肿
特应性皮炎
皮肤病科
慢性荨麻疹
遗传性血管水肿
梅德林
政治学
法学
作者
Jonathan A. Bernstein,Chistian Apfelbacher,Derek K. Chu,Lynda C. Schneider,Sarbjit S. Saini,Moshe Ben Shoshan
标识
DOI:10.1016/j.jaip.2024.08.021
摘要
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 (MID). 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 apps) 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.
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