Towards a patient-centred definition for atopic dermatitis flare: a qualitative study of adults with atopic dermatitis

Abstract

Background The term “flare” is used across multiple diseases, including atopic dermatitis (AD), to describe increased disease activity. While several definitions of an AD flare have been proposed, no single definition of AD flare is widely accepted, and it is unclear what the term AD flare means from the patient perspective. Objectives The objectives of this qualitative study were to understand AD flares from the adult patient perspective and to explore how adult AD patients define an AD flare. Methods Participants were adults with atopic dermatitis recruited from the National Eczema Association (NEA) Ambassadors Program, a volunteer patient engagement program. They participated in online focus groups to discuss how they describe AD flares from their perspective, how they define its start and stop, and how they relate to existing definitions of flare. Using a grounded theory approach, transcripts were analyzed and coded using an iterative process to identify concepts to support a patient-centered conceptual framework of “flare.” Results Six 90-minute focus groups of 3-8 participants each were conducted with 29 US adult (≥18 years) AD patients who had at least one self-reported AD flare in the past year. When participants were presented with examples of previously published definitions of AD flare, participants found them problematic and unrelatable. Specifically, they felt that flare is hard to quantify or put on a numeric scale, definitions cannot solely be about skin symptoms, and clinical verbiage does not resonate with patients’ lived experiences. Concepts identified by patients as important to a definition of flare were changes from patient’s baseline/patient’s normal, mental/emotional/social consequences, physical changes in skin, attention needed/all-consuming focus, itch-scratch-burn cycle, and control/loss of control/quality of life. Figuring out the trigger that initiated a flare was an underlying concept of the experience of flare, but not considered a contributor to the definition. Conclusions The results highlight the complexity and diversity of AD flare experiences from the adult patient perspective. Previously published definitions of AD flares did not resonate with patients, suggesting a need for a patient-centered flare definition to support care conversations and AD management.