Bridging the Gap Between Patient Experience and Clinical Definitions in Eczema

"The impact on mental health is a major aspect that patients noted, which often goes unnoticed in clinical definitions," said Wendy Smith Begolka, MBS, the Chief Strategy Officer at the National Eczema Association (NEA).

Renata Block, MMS, PA-C, a board-certified physician assistant in Chicago, Illinois, and a Dermatology Times Editorial Advisory Board member, and Begolka shed light on the evolving understanding of eczema flares, emphasizing the disconnect between clinical definitions and patient experiences. In a previous interview, Begolka and Block discussed the NEA's mission, initiatives, and commitment to enhancing the lives of those affected by eczema.

Flares are often ambiguously defined, with clinicians relying on physical symptoms and changes in treatment. However, Begolka highlighted that patient perspectives encompass a broader range of experiences, including unseen early warning signs and mental health impacts.

"We actually just completed a consensus process with members of our community, a Delphi process, to really understand what they thought was most important to include in a definition of flare," she explained. "The vast majority of patients felt that some of the definitions in clinical trials were not inaccurate, but they were incomplete."

Current definitions often focus on physical symptoms or the need for therapy adjustments, but patients report sensing changes before visible manifestations occur.

"A lot of the definition or consideration of the flare is about what is unseen. It’s about what we call the ‘spidey sense’—things that are changing but not necessarily visible yet on the skin," Begolka said.

She also noted the ongoing inflammatory activity in eczema, even when symptoms are not outwardly visible.

"Even though they're not phenotypically flaring, the inflammatory response within the body is constantly happening," she noted.

Given these insights, Begolka emphasized the importance of patient-clinician communication.

"It is something that is very individualized, and so that’s why it is so important to have that conversation with your patient: How do you think about your flares, and how do you quantify that?" she posed.

As research continues, efforts like NEA’s consensus process aim to refine flare definitions, ensuring they reflect the full spectrum of patient experiences and needs.

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