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. 2024 Jun 20;191(1):82-91.
doi: 10.1093/bjd/ljae037.

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

Katie N Dainty  1   2 , Isabelle J C Thibau  3 , Krystle Amog  1   2 , Aaron M Drucker  4   5 , Matthew Wyke  6 , Wendy Smith Begolka  3
Affiliations

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

Katie N Dainty et al. Br J Dermatol. .

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: To understand AD flares from the adult patient perspective and to explore how adults with AD define an AD flare.

Methods: Participants were adults with AD recruited from the National Eczema Association Ambassadors programme, a volunteer patient-engagement programme. 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 analysed and coded using an iterative process to identify concepts to support a patient-centred conceptual framework of 'flare'.

Results: Six 90-min focus groups of 3-8 participants each were conducted with 29 US adults (≥ 18 years of age) with AD 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 numerical 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 was 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-centred flare definition to support care conversations and AD management.

Plain language summary

Atopic dermatitis (AD) is a skin disease that affects 10% of children and 7% of adults living in the USA. People living with AD experience inflamed, itchy skin with periods of worsening called ‘flares’. To date, there have been many proposed definitions of flare; however, no definition describes the significant features of a flare as identified by those who have experienced flares first hand. The goal of this study was to create a new patient-informed definition of an AD flare. This patient-centred study was done by an international team of authors from the USA and Canada, including two authors from a patient advocacy organization and a person living with AD. We virtually interviewed groups of US adults with AD to discuss what flares meant to them. Themes that people living with AD felt were important to a flare definition included experiencing a change from a subjective baseline, physical changes of the skin, increased demand/focus on management of the skin, loss of control/quality of life, undergoing psychological/social consequences and the itch–scratch cycle. Flares were also associated with trying to figure out the cause of the flare. People with AD felt existing flare definitions did not reflect their experiences due to difficulty applying a numerical scale to their multidimensional experiences, definitions being exclusively about skin, and wording being too clinical and not relevant to their lived experience. The results of our study reveal important concepts of an AD flare from the patient perspective and highlight the diversity of features that define a flare. This patient-informed definition of flare can assist healthcare professionals in their delivery of care.

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Conflict of interest statement

Conflicts of interest W.S.B. reports sponsorship from Sanofi/Regeneron paid to her institution during the conduct of the study; advisory board honoraria paid to her institution from Pfizer and Amgen; and research grants from Pfizer. A.M.D. has received compensation from the British Journal of Dermatology (reviewer and Section Editor), American Academy of Dermatology (guidelines writer), National Eczema Association (NEA; grant reviewer), Canadian Dermatology Today (manuscript writer) and Canadian Agency for Drugs and Technologies in Health ­(consultant). He has received research grants to his institution from the NEA, the Eczema Society of Canada, the Canadian Dermatology Foundation, the Canadian Institutes for Health Research, the US National Institutes of Health and the Physicians Services Incorporated Foundation. K.N.D. and A.M.D. received research funding paid to their institutions from the NEA for the conduct of the research reported in this manuscript. I.J.C.T., K.A. and M.W. declare no conflicts of interest.

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