Division of Dermatology, Department of Medicine, University of Toronto, Ontario, Canada.
Women's College Research Institute and Department of Medicine, Women's College Hospital, Toronto, Ontario, Canada.
JAMA Dermatol. 2024 Oct 1;160(10):1099-1106. doi: 10.1001/jamadermatol.2024.3054.
Flare is a term commonly used in atopic dermatitis (AD) care settings and clinical research, but little consensus exists on what it means. Meanwhile, flare management is an important unmet research and treatment need. Understanding how various therapies might comparatively improve AD flares as a measure of treatment effectiveness may facilitate shared decision-making and enable assessment of effectiveness within and outside clinical settings.
To identify patient-reported attributes associated with an AD flare to develop a patient-centered, consensus-based working definition.
DESIGN, SETTING, AND PARTICIPANTS: This consensus survey study used a modified eDelphi method involving consensus-building focus groups and a survey conducted from January 10 through October 24, 2023. Focus groups were conducted virtually, and the online survey was advertised to National Eczema Association members. US adults aged 18 years or older with AD were recruited via convenience sampling.
Lived experience of AD.
The main outcome was consensus on which attributes of AD to include in a patient-centric definition of flare. Using a rating scale (range, 1-9), consensus for the modified eDelphi statement rating was defined as at least 70% of participants rating a statement as 7 to 9 (critical to a flare definition) and less than 15% rating it as 1 to 3 (not important).
Twenty-six participants with AD who completed focus group activities (24 aged 18-44 years [92.3%] and 2 aged 45-64 years [7.7%]; 18 women [69.2%]) and 631 participants with AD (mean [SD] age, 45.5 [18.1] years; 533 women [84.5%]) who completed the survey were included in the analysis. Fifteen statements reached consensus from the focus groups, and of those, 12 reached consensus from survey participants. More than half (334 of 631 [52.9%]) of survey participants reported alignment with their health care practitioner on what a flare is, and most (478 of 616 [77.6%]) reported that a patient-centered definition would be useful when communicating with their health care practitioner about their condition.
In this study, participants with AD reached consensus on what an AD flare means from the patient perspective. This understanding may improve research and care by addressing this key patient-centered aspect of evaluating treatment effectiveness.
flare 一词在特应性皮炎（AD）护理环境和临床研究中经常使用，但对于其含义尚未达成共识。与此同时，flare 的管理是一个重要的未满足的研究和治疗需求。了解各种疗法如何可以比较改善 AD flare，作为治疗效果的衡量标准，可能有助于共同决策，并能够在临床环境内外评估效果。
确定与 AD flare 相关的患者报告属性，以制定以患者为中心的共识定义。
设计、设置和参与者： 本共识调查研究使用了改良的 eDelphi 方法，包括共识构建焦点小组和 2023 年 1 月 10 日至 10 月 24 日进行的在线调查。焦点小组在线进行，在线调查向全国湿疹协会会员宣传。通过便利抽样招募美国年龄在 18 岁或以上、患有 AD 的成年人。
AD 的生活体验。
主要结果是就 AD 的哪些属性纳入以患者为中心的 flare 定义达成共识。使用评分量表（范围，1-9），至少 70%的参与者将修改后的 eDelphi 语句评分评为 7-9（对 flare 定义至关重要），且少于 15%的参与者评为 1-3（不重要），则认为达成共识。
26 名患有 AD 的参与者完成了焦点小组活动（24 名年龄 18-44 岁[92.3%]，2 名年龄 45-64 岁[7.7%]；18 名女性[69.2%]），631 名患有 AD 的参与者（平均[标准差]年龄，45.5[18.1]岁；533 名女性[84.5%]）完成了调查。来自焦点小组的 15 项声明达成共识，其中 12 项来自调查参与者。超过一半（631 名中的 334 名[52.9%]）的调查参与者表示与他们的医疗保健从业者就 flare 是什么达成一致，并且大多数（616 名中的 478 名[77.6%]）表示当与他们的医疗保健从业者就他们的病情进行沟通时，以患者为中心的定义将是有用的。
在这项研究中，AD 患者从患者的角度就 AD flare 的含义达成了共识。这种理解可能通过解决评估治疗效果的这一关键患者为中心方面来改善研究和护理。
