What Constitutes a Flare? The Patient Perspective
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In this interview, Wendy Smith Begolka, MBS, chief strategy officer for research, medical, and community affairs at the National Eczema Association (NEA), discusses the NEA’s recent work on reaching a patient-centered definition of atopic dermatitis (AD) flares.
The Dermatologist: What are the key attributes that define an AD flare based on patient feedback?
Wendy Smith Begolka: Our work has progressed through several approaches to collecting patient-reported attributes. Our first paper, published in the British Journal of Dermatology,1 identified 6 patient-described attributes of a flare. These include control or loss of control, changes in quality of life, and physical changes in the skin. Additionally, we found that mental, emotional, and social consequences were important, as well as shifts from baseline symptoms like the itch-scratch-burn cycle. Patients also described their AD as becoming an all-consuming focus during a flare.
We began with a conceptual exercise to understand these broad themes. Then, based on these findings, our recent work published in JAMA Dermatology2 took those concepts and turned them into statements that patients could evaluate. Patients rated these statements, which helped us understand the relative importance of each aspect of a flare.
From that modified Delphi exercise, we ended up with 12 critical statements for defining a flare, with 3 being considered the most important. These were: (1) when symptoms require significantly more attention and time than usual, (2) a worsening of physical symptoms, and (3) a worsening of itching. Interestingly, while previous flare definitions have largely focused on signs and symptoms, patients emphasized a more holistic view, including mental and emotional impacts.
The Dermatologist: How important is it to have a standardized, patient-centered definition of AD flares for improving communication between patients and health care providers?
Wendy Smith Begolka: What we have heard from the patient community is that existing definitions often do not resonate with them. In our study, about 80% of patients felt the current definitions were inadequate, and over 50% said their health care providers were not aligned with them on what constitutes a flare.
If patients and providers are not on the same page about when the disease is being exacerbated or alleviated, it can be hard to agree on a treatment approach, evaluate its effectiveness, or decide when to make adjustments. Alignment on what constitutes a flare is fundamental to improving communication and understanding the true impact of treatment—not only on the skin but also on the less visible aspects of managing AD.
The Dermatologist: How do patients typically describe their flares, and how do these descriptions differ from the clinical definitions used in research?
Wendy Smith Begolka: Patients describe their flares in various ways. In our study, there were 12 different statements that 70% of patients agreed aligned with the definition of a flare. Patients feel that a flare encompasses a broader range of disease burdens than what health care providers typically focus on, such as changes in specific signs and symptoms or the need for therapy adjustments.
Additionally, patients often describe a sort of “Spidey sense” when a flare is coming. They can sense it before any visible skin changes appear. This reflects their awareness that something is off even before physical symptoms worsen. Patients also talk about the end of a flare differently, as their experience of its onset and resolution can differ from traditional medical perspectives.
The Dermatologist: How can a consensus-based definition of AD flares improve shared decision-making when evaluating treatment effectiveness?
Wendy Smith Begolka: If patients and health care providers align on what defines a flare, it allows for much more meaningful conversations. This shared language helps providers better understand which outcomes are most important to patients. For example, if a patient defines a flare as something that affects their ability to engage in social activities, the provider can tailor treatment to address those concerns.
We believe this alignment is essential, not just for choosing therapies but also for discussing the duration, intensity, and location of flares. This framework can guide conversations about treatment effectiveness, going beyond just a “yes” or “no” on whether a flare is occurring.
The Dermatologist: How might a standardized flare definition impact future research and AD treatment strategies, particularly in terms of flare management?
Wendy Smith Begolka: A better understanding of what constitutes a flare will help focus research on outcomes that matter most to patients. Many clinical trials have focused on symptoms like skin appearance and itching, but from our work and patient feedback, we know that flares are a significant factor in everyday life and treatment decisions. Understanding flares beyond a simple “yes” or “no” can lead to more comprehensive discussions between patients and health care providers and help guide research on new therapies.
Based on our work and feedback from patients, understanding their flares and flare cycles is essential. NEA has already developed the EczemaWise app, allowing patients to track aspects of their disease over time and share that information with their health care providers. We are also developing a flare tracker within EczemaWise, which we hope to release soon. We believe this tool will be helpful for patients and providers to better communicate and manage the treatment journey.
The Dermatologist: What challenges exist in reaching a consensus on a patient-centered definition of AD flares, and how can these challenges be addressed?
Wendy Smith Begolka: Reaching consensus on a singular definition of an AD flare is challenging, especially considering the diversity of the patient community and the heterogeneous nature of the disease. While our work has brought us closer to including the patient’s voice in the conversation, there are limitations. Although we had broad patient input, we have an opportunity to further this work to ensure the diversity of the patient perspective is represented.
Most importantly, consensus does not mean unanimity—it is broad agreement, but individual patients may still have different experiences. It is essential to use the consensus framework but continue having individual conversations with patients to ensure their specific experiences are acknowledged.
References
1. Dainty KN, Thibau IJC, Amog K, Drucker AM, Wyke M, Smith Begolka W. Towards a patient-centered definition for atopic dermatitis flare: a qualitative study of adults with atopic dermatitis. Br J Dermatol. 2024;191(1):82-91. doi:10.1093/bjd/ljae037
2. Drucker AM, Thibau IJC, Mantell B, Dainty KN, Wyke M, Smith Begolka W. Consensus on a patient-centered definition of atopic dermatitis flare. JAMA Dermatol. 2024;160(10):1099-1106. doi:10.1001/jamadermatol.2024.3054
