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Enregistrement W4401436082 · doi:10.1093/bjd/ljae266.051

677 - Establishing a patient-centered definition of atopic dermatitis flare: insights from a modified eDelphi study

2024· article· en· W4401436082 sur OpenAlexaff
Wendy Smith Begolka, Isabelle J. Thibau, B.S. Mantell, Katie N. Dainty, Mathew Wyke, Aaron M. Drucker

Notice bibliographique

RevueBritish Journal of Dermatology · 2024
Typearticle
Langueen
DomaineMedicine
ThématiqueDermatology and Skin Diseases
Établissements canadiensNorth York General HospitalWomen's College HospitalPublic Health OntarioUniversity of Toronto
Organismes subventionnairesnon disponible
Mots-clésMedicineFlareAtopic dermatitisPerspective (graphical)AnxietyRating scaleDelphi methodFocus groupPatient-reported outcomeDiseaseFamily medicineClinical psychologyPsychologyQuality of life (healthcare)PsychiatryNursingDermatologyInternal medicineDevelopmental psychology

Résumé

récupéré en direct d'OpenAlex

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.

Récupéré en direct depuis OpenAlex et désinversé. Les résumés ne sont pas conservés dans cette base de données : les index inversés représentent 8,6 Go des 9,3 Go de texte de la base, et le serveur dispose de 13 Go libres.

Comment cette classification a été obtenuedéplier

Prédiction machine sur la base complète

Imitation des enseignants

Ni prévalence calibrée, ni vérité terrain. Validation humaine à venir. Le volet Gemma est une étiquette directe du modèle pour chaque travail de la base, lue sur la notice réduite au titre. Le volet Codex est un classifieur appris des 10 348 étiquettes directes de Codex et calibré sur les taux pondérés de l'échantillon; les champs sans appui suffisant ne portent aucun appel Codex. Le mode candidate est l'union des deux volets; le consensus est leur intersection. Ces sorties portent le statut machine_predicted_unvalidated et ne sont pas des étiquettes humaines.

score de la tête « metaresearch » (Codex)0,071
score de la tête « metaresearch » (Gemma)0,065
Version: metacan-v3-hybrid-931329e0061cStatut de validation: machine_predicted_unvalidated
Catégories candidatesaucune
Catégories consensuellesaucune
DomaineSignal candidat: aucune · Signal consensuel: aucune
Devis d'étudeSignal candidat: Qualitatif · Signal consensuel: Qualitatif
GenreSignal candidat: Empirique · Signal consensuel: Empirique
Score de désaccord entre enseignants0,071
Score d'incertitude au seuil0,375

Scores du classifieur distillé par catégorie (deux têtes)

CatégorieCodexGemma
Métarecherche0,0710,065
Méta-épidémiologie (sens strict)0,0010,001
Méta-épidémiologie (sens large)0,0010,001
Bibliométrie0,0020,001
Études des sciences et des technologies0,0050,005
Communication savante0,0050,004
Science ouverte0,0020,009
Intégrité de la recherche0,0020,004
Charge utile insuffisante (le modèle a refusé de juger)0,0040,001

Scores machine (provisoires)

Les deux têtes enseignantes du modèle étudiant, lues sur ce travail. Un score ordonne la base pour la relecture; il n'affirme jamais une catégorie, et le statut de validation accompagne chaque rangée tel quel.

Scores de référence d'un modèle non mature (critères de maturité non atteints, 7 itérations). Un score ordonne; il n'affirme jamais une catégorie.

Tête enseignante Opus0,023
Tête enseignante GPT0,260
Écart entre enseignants0,237 · la distance entre les deux têtes enseignantes sur ce seul travail
Statut de validationscore_only:v0-immature-baseline · tel quel depuis la passe de notation : score_only signifie que le nombre peut ordonner les travaux, et qu'aucune étiquette de catégorie n'en découle

Classification

machine, non validée

Prédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.

Les modèles n’ont appliqué aucune catégorie : rien dans la taxonomie ne correspondait à ce travail.
Devis d'étudeQualitatif
Domainenon disponible
GenreEmpirique

Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».

En bref

Citations0
Publié2024
Routes d'admission1
Résumé présentoui

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