677 - Establishing a patient-centered definition of atopic dermatitis flare: insights from a modified eDelphi study
Bibliographic record
Abstract
Abstract Background Atopic dermatitis (AD) flares and their management are a significant unmet research and treatment need. The term “flare” is commonly used to describe AD disease activity, but there has been little work done to understand the meaning of this term from the patient perspective in research or clinical settings, hindering an effective patient-healthcare provider (HCP) relationship and patient-centered care. The potential for, and recurrence of flares contributes to marked patient anxiety and negative emotional sentiment, making flare reduction a highly sought-after treatment outcome for patients. Objectives The objective of this study is to establish patient-reported attributes associated with AD flares to develop a more patient-centered definition to support real-world decision-making and enhance AD outcomes. Methods Following in-depth qualitative work with patients to develop Delphi items, a modified eDelphi process was conducted January-June 2023 with focus group participants recruited from the National Eczema Association (NEA) Ambassador program. The aim of the Delphi was to determine the most/least important aspects of an AD flare from their perspective. Participants rated 98 flare-related statements on a 1-9 scale (1-3 = not important, 4-6 = important but not critical, 7-9 = critically important), indicating their importance to defining AD flares, alongside several other questions about flaring. Consensus for a statement was defined a-priori as ≥70% rating 7-9 and <15% rating 1-3. Statements reaching consensus were subsequently evaluated by participants in a ranked pair exercise resulting in a final list of statements important to include in a definition of flare from the patient perspective. A subsequent national survey distributed by NEA assessed broader patient agreement with the working concepts essential to a definition identified in the modified eDelphi exercise, with stratified analysis to assess variations in agreement among respondent sub-groups. Results Twenty-six participants completed the eDelphi process, with 15/98 statements achieving ranked consensus on critical flare attributes. Survey responses (n=631) confirmed agreement with 12/15 statements; no statement received 100% agreement by all participants. The 3 statements with the highest agreement were: “when my symptoms take significantly more of my attention than normal,” “a worsening of physical symptoms associated with AD,” and “a worsening of itching associated with AD.” Statements ranked as the most important to a definition were “acute worsening of AD symptoms”, “a change in physical health that interrupts my day-to-day”, and “an “eruption” on the body”. Consensus results were similar across most subgroups of interest with the exception of those whose eczema was mild, those who completed some high school, and those who identified as Native American/Alaskan Native. Most participants (80%; 503/631) found existing flare definitions inadequate, with only 53% (334/631) indicating agreement with their HCP on what an AD flare is. Conclusion This study found that current definitions of AD flare based on HCP assessment of signs or the clinical reaction to AD (e.g. treatment escalation) resonate poorly with most adult AD patients and differ from concepts achieving consensus by study participants. The patient perspective deviated most significantly from existing definitions in terms of how a flare can negatively impact lifestyle and be associated with greater preoccupation. However, despite achieving conceptual agreement for several statements, patient perspectives varied, highlighting the importance of individualized discussions in clinical settings. This study suggests that a patient-centered flare definition can potentially enhance care and treatment efficacy in AD management as current definitions fail to capture what is meaningful to patients. Understanding nuanced patient perspectives is vital for individualized care and shared decision-making. Future efforts should focus on developing assessment tools and outcome measures based on patient-identified flare attributes, facilitating better treatment monitoring and personalized care delivery.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.071 | 0.065 |
| Meta-epidemiology (narrow) | 0.001 | 0.001 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.002 | 0.001 |
| Science and technology studies | 0.005 | 0.005 |
| Scholarly communication | 0.005 | 0.004 |
| Open science | 0.002 | 0.009 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.004 | 0.001 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".