NEW RESEARCH FROM THE NATIONAL ECZEMA ASSOCIATION AIMS TO ESTABLISH PATIENT-CENTERED CLINICAL DEFINITION OF 'FLARE'

'Flare' is commonly used in eczema care and clinical research, but with little agreement on what it means.

NOVATO, Calif., Sept. 13, 2024 /PRNewswire/ -- The National Eczema Association (NEA) today announced the publication of its 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. 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.

Over 31 million Americans live with eczema, a chronic skin disease without a known cause or cure that is associated with significant and multifaceted burden. 'Flare' is a term commonly used by eczema patients, healthcare providers, and clinical researchers, but with little agreement on what it means; meanwhile, flare management is a significant unmet research and treatment need.

"When it comes to eczema, flare is a nearly ubiquitous term," said Wendy Smith Begolka, senior author of the study and chief strategy officer at NEA. 

Generally, the term "flare" describes a worsening of symptoms. It's a word used in conversations between patients and healthcare providers and one used to gauge if eczema is being well managed or if a particular treatment is having an impact. 

"But there's actually no single standardized definition of an eczema flare and no definition that incorporates patients' lived experiences and perspectives," Smith Begolka said. "In this study, we wanted to get closer to defining what 'flare' actually signifies to people with eczema."

Research methods
NEA researchers first conducted 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%).

Key takeaways
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:

1. A change from the person's perceived baseline or "normal"
2. Mental, emotional and social consequences of flares
3. Physical changes in the skin
4. Increased demand for and focus on management of their eczema
5. Experiencing the itch-scratch-burn cycle
6. 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.

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.

The results of this study highlight the complexity and diversity of eczema flare experiences from adult patient perspectives and how current definitions of flares do not resonate with many people with eczema.

"As one study participant told us, 'a flare is deeper than the skin,'" said Smith Begolka. "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.

For more information about this study and other research conducted by NEA, visit NationalEczema.org/surveys.

About the National Eczema Association
Founded in 1988, the National Eczema Association (NEA) is a 501(c)(3) nonprofit and the largest patient advocacy organization serving the over 31 million Americans who live with eczema and those who care for them. NEA provides programs and resources to elevate the diverse lived experience of eczema, and help patients and caregivers understand their disease, actively engage in their care, find strength in one another – and improve their lives. Additionally, NEA advances critical eczema research and partners with key stakeholders to ensure the patient voice is represented and valued in education, care and treatment decision-making. The eczema community is at an exciting juncture, with increased recognition of the seriousness and burden of eczema and a surge in scientific interest and development of new treatments. Bolstered by NEA's strategic plan, Blueprint 2025, we are driving toward the ultimate vision: a world without eczema. Learn more at NationalEczema.org.

SOURCE National Eczema Association