What is an eczema flare?
Flare is commonly used in eczema care and clinical research, but there’s been little agreement on what it means until now.
The National Eczema Association conducted real-world research identifying patient-reported attributes associated with an atopic dermatitis (eczema) ‘flare’ to develop a patient-centered, consensus-based working definition of the term.
While more work on this topic is needed, analysis of focus group discussions revealed six themes on what patients felt were important in a flare definition.
They include:
- A change from the person’s perceived baseline or “normal”
- Mental, emotional and social consequences of flares
- Physical changes in the skin
- Increased demand for and focus on management of their eczema
- Experiencing the itch-scratch-burn cycle
- Loss of control and loss of some quality of life related to the flare
These themes resulted in 12 flare definitional statements that achieved agreement across a wider adult AD patient population with the top three being: Acute worsening of symptoms, changes in physical health that interrupt the day-to-day, and an eruption on some area of the body.
The latest results from the study have been published in the Journal of the American Medical Association Dermatology. (Initial study findings were previously published in the British Journal of Dermatology.)
To arrive at the new definition, NEA researchers held online focus group discussions with 29 adults with eczema to learn how they describe eczema flares, how they recognize a flare’s beginning and ending, and how they relate to current flare definitions. Transcripts of the conversations were then analyzed for common themes, which were developed into possible ‘flare’ definitional statements. Focus group participants were mostly female (69%), Asian or Asian American (35%), 18–35 years old (62%) and diagnosed with eczema in childhood (83%). All participants self-reported moderate or severe eczema when their eczema is at its worst.
A modified eDelphi approach was used to assess consensus among the focus group participants on which statements about AD flares were important to include in a patient-centered definition.
Fifteen statements that achieved focus group consensus were then evaluated among a wider group of adults with AD in a survey. The 631 survey participants were mostly female (85%), White (70%), average age of 45.5 years, and diagnosed with eczema in childhood (56%).
According to the focus groups and survey respondents, existing definitions of “flares” that have been used in research and clinical trials do not adequately reflect their experiences because these definitions often: incorporate numeric scales which are difficult to apply to multi-dimensional experiences; focus solely on the skin, neglecting other aspects of a real-life flare; and include language that’s “too clinical” to be fully relevant from the patient perspective.
In contrast to previously published definitions of flare focused solely on increased intensity of signs and symptoms of eczema, participants in this study with lived experience with eczema highlighted the importance of downstream consequences, including the increased attention required to manage the condition and interruption of daily activities.
“As one study participant told us, ‘a flare is deeper than the skin,'” says Wendy Smith Begolka, senior author of the study and chief strategy officer at NEA, in a news release. “Better understanding of this can improve patient-provider communication, relationships, and shared decision-making.”
The NEA research team is continuing to work on this important topic with the goal of having a shared language between patients, healthcare providers, and treatment developers about eczema flares.
