Survey Points to Patient-Centered Definition of Atopic Dermatitis Flare

A new consensus survey of US adult patients with atopic dermatitis resulted in 12 statements on which participants agreed for the conceptualization of atopic dermatitis flares. Those ranked by respondents as most important to flare definitions were acute worsening of disease symptoms and health shifts that interrupt daily life.¹

This new survey research was led by Aaron M. Drucker, MD, ScM, from the division of dermatology at the University of Toronto department of medicine. Drucker and colleagues noted that despite focus group research by the National Eczema Association (NEA) that identified 6 key concepts for a patient-centered definition of flare, there had still not been a standardized definition.²

“The objective of this study was to identify patient-reported attributes associated with the term flare and to achieve consensus on what features are critical to defining (atopic dermatitis) flares from the patient perspective,” Drucker et al. wrote.¹

Background and Design

The research team’s consensus survey study involved the use of a modified eDelphi process, with the team gathering input from adult individuals 18 years or older who also had diagnoses of atopic dermatitis. The sample was used to represent a wide variety of lived experiences and demographics.

For the purposes of supplementing this research, the team also performed a preliminary assessment of the validity of a newly-proposed flare definition. An individual with the skin disease who was also not directly involved in the study was also brought in from the National Eczema Association (NEA) to give the investigators additional patient perspectives.

Focus groups along with the online survey were implemented, with the investigators conducting their research from January - October 2023 and administering the survey via Qualtrics from September - October 2023. Virtual focus groups were used by the research team and they promoted the survey to NEA members.

The major goal shared by the research team was to determine whether the community of patients with atopic dermatitis agreed with the core concepts of the flare definition identified through the eDelphi process. A consensus was sought on the characteristics of the skin disease that should be included in a patient-centered definition.

A rating scale was used by the investigators and spanned from 1 - 9, with the definition of consensus being 70% minimum of participants determining that an item was anywhere from 7 - 9. This rating would suggest the element being judged was critical to the definition of a flare. The research team also looked at factors that fewer than 15% rated as unimportant, with 1 - 3 ratings specifically.

Consensus Statements and Survey Results

The investigators overall evaluation included a total of 26 participants that had atopic dermatitis and took part in the evaluated focus groups. They noted that 92.3% of these subjects were younger adults in the age 18-44 bracket, with 69.2% being women.

The research team also reported that there were 631 survey respondents with atopic dermatitis, highlighting these subjects’ average age as 45.5 years. Additionally, the team found that 84.5% had been labeled as women.

In their focus group discussions specifically, the investigators produced 15 statements that reached a consensus. They found that 12 statements led to consensus among the survey respondents.

Among survey respondents, 52.9% were reported by the research team to have indicated alignment with their health care providers on flare definition. However, 77.6% of these respondents reported believing in the value of a patient-centered definition for the purposes of improving clinician-patient communication.

The investigators noted that results suggested health care providers should be aware that individual patients' definitions of disease flare may not have the same meaning.

“Our findings may be useful in clinical practice to improve communication between patients and HCPs who may be using the term flare without a mutual understanding of its meaning,” they wrote. “The findings may also be applied to the development of outcome measures focused on (atopic dermatitis) flares, which is an important treatment outcome for people with (atopic dermatitis).”

References

1. ^{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. Published online September 11, 2024. doi:10.1001/jamadermatol.2024.3054.}
2. ^{Dainty KN, Thibau IJC, Amog K, Drucker AM, Wyke M, Begolka WS. Towards a patient-centred 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.}