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Enregistrement W4317952713 · doi:10.1093/bjd/ljac140.023

328 Understanding the impact of atopic dermatitis on patients: a large international, ethnically diverse survey-based qualitative study

2023· article· en· W4317952713 sur OpenAlexaff
Andreas Wollenberg, Melinda Gooderham, Norito Katoh, Valéria Aoki, Andrew Pink, Yousef Binamer, Jonathan I. Silverberg

Notice bibliographique

RevueBritish Journal of Dermatology · 2023
Typearticle
Langueen
DomaineMedicine
ThématiqueDermatology and Skin Diseases
Établissements canadiensQueen's University
Organismes subventionnairesnon disponible
Mots-clésMedicineEthnically diverseAtopic dermatitisPopulationDiseaseQualitative researchTelephone interviewFamily medicineEnvironmental healthPathology

Résumé

récupéré en direct d'OpenAlex

Abstract Atopic dermatitis (AD) is a common, chronic inflammatory skin disease often associated with a significant long-term disease burden. AD can profoundly impact a patient’s physical and mental health. Current AD management recommendations do not capture patient perspectives on their treatment needs, expectations and drivers of decision-making. Qualitative patient research is needed to support the creation of patient-centric recommendations for AD assessment and management. To study a large, international, ethnically diverse population of patients with AD that will enable the creation of patient-centric recommendations for AD management. Adult patients (≥18 years old) receiving treatment for AD were recruited from patient market research databases, clinician referrals, and local advertising. All patients were screened via a questionnaire to ensure a balanced and diverse range of ages, gender, educational levels, geographic locations, and AD severities, and to confirm that they were currently receiving treatment for AD. Patients participated in a 45-minute, 1 : 1 telephone interview conducted in their native language by the research team. These interviews explored the impact of AD on patients’ lives, patients’ most troublesome symptoms, how patients make treatment decisions and patients’ treatment expectations. Patients were also questioned on their current knowledge of AD scoring systems and what they thought was most important to include in AD scoring systems. A large ethnically diverse global patient population (N = 88; 15 countries) was included in the study. AD was reported to have a substantial, broad impact on patients’ lives, with patients being affected by AD at all times of the day and night. Itch, skin redness, dry/flaky skin and sleep disturbance were the most frequently reported signs and symptoms, with over 75% of patients experiencing them every 1–3 days. The itch was cited by 37% of patients as being the primary reason for changing AD treatments. In addition, the research revealed that mental health issues such as anxiety and depression are common in patients suffering from AD, and these features have the greatest negative impact on patients’ daily lives. Patients reported that AD impairs their quality of life, with many perceiving that clinicians underestimate this burden; this was reported more often for non-specialists compared with dermatologists. Patients also felt they were often not given enough time to express themselves in medical appointments and reported an inability to optimally communicate with their clinicians. Patients had little awareness of AD severity scoring systems, with almost no survey respondents reporting their use during previous healthcare encounters. When questioned about their preferences for different AD scoring systems, patients favoured using a combination of patient-reported outcomes to reflect disease burden and clinician-reported outcomes to ensure consistency across different physicians and patient populations. These preferences indicate that an optimal scoring system would consider a diverse range of symptoms, and the variable nature of AD, and be accessible regardless of education level. No single AD scoring system was preferred by all patients. Patients indicated that they would like AD scoring systems to be incorporated into clinical practice, to help them communicate their AD burden to clinicians, and to provide a clear framework for monitoring treatment response. This global patient study generated insights into the burden of AD on patients’ lives, their expectations of treatment, and their views on AD scoring methods. Results provided an evidence base for the development of patient-centric recommendations for AD management.

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)0,010
score de la tête « metaresearch » (Gemma)0,014
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 enseignants0,016
Score d'incertitude au seuil0,053

Scores du classifieur distillé par catégorie (deux têtes)

CatégorieCodexGemma
Métarecherche0,0100,014
Méta-épidémiologie (sens strict)0,0000,001
Méta-épidémiologie (sens large)0,0010,001
Bibliométrie0,0010,001
Études des sciences et des technologies0,0050,004
Communication savante0,0030,003
Science ouverte0,0010,005
Intégrité de la recherche0,0010,002
Charge utile insuffisante (le modèle a refusé de juger)0,0040,000

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 Opus0,073
Tête enseignante GPT0,399
Écart entre enseignants0,326 · 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

Citations5
Publié2023
Routes d'admission1
Résumé présentoui

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