Refractory Inflammatory Arthritis definition and model generated through patient and multi-disciplinary professional modified Delphi process
Notice bibliographique
Résumé
ABSTRACT Objective Various definitions have been proposed for Refractory Disease in people with Rheumatoid Arthritis; however, none were generated for Polyarticular Juvenile Idiopathic Arthritis or involving adult and paediatric multidisciplinary healthcare professionals and patients. The study aim is to redefine Refractory Disease, using Delphi methodology. Methods Three rounds of surveys (one nominal group and two online (2019–2020)) to achieve consensus using a predetermined cut-off were conducted voting on: a) name, b) treatment and inflammation, c) symptoms and impact domains, and d) rating of individual components within domains. Theoretical application of the definition was conducted through a scoping exercise. Results Votes were collected across three rounds from Patients, Researchers and nine multi-disciplinary healthcare professional groups (n=106). Refractory Inflammatory Arthritis was the most popular name. Regarding treatment and inflammation, these were voted to be kept broad rather than specifying numbers/cut offs. From 10 domains identified to capture symptoms and disease impact, six domains reached consensus for inclusion: 1) Disease Activity, 2) Joint Involvement, 3) Pain, 4) Fatigue, 5) Functioning and Quality of Life, and 6) Disease-Modifying Anti-Rheumatic Drug Experiences. Within these domains, 18 components, from an initial pool (n=73), were identified as related and important to capture multi-faceted presentation of Refractory Inflammatory Arthritis, specifically in Rheumatoid Arthritis and Polyarticular Juvenile Idiopathic Arthritis. Feasibility of the revised definition was established (2022-2023) with good utility as was applied to 82% of datasets (n=61) incorporating 20 outcome measures, with two further measures added to increase its utility and coverage of Pain and Fatigue. Conclusion Refractory Inflammatory Arthritis has been found to be broader than not achieving low disease activity, with wider biopsychosocial components and factors incorporating Persistent Inflammation or Symptoms identified as important. This definition needs further refinement to assess utility as a classification tool to identify patients with unmet needs. What is already known on this topic In recent years within Rheumatology, parallel bodies of work have reached similar conclusions regarding the broadening of the Refractory or the wider Difficult-to-Treat concept. What this study adds In this paper, we provide a different angle to define, measure, and conceptualise Refractory Inflammatory Arthritis, using health psychology theory across Polyarticular Juvenile Idiopathic Arthritis and Rheumatoid Arthritis with the input of patients, rheumatologists, and multi-disciplinary healthcare professionals. We support and extend recent definitions of refractory rheumatoid arthritis by detailing a three-part definition identified as important to both patients and multi disciplinary healthcare professionals that can also be applied to Polyarticular Juvenile Idiopathic Arthritis: 1) Treatment, 2) Inflammation, and 3) Symptoms and Impact with 18 specific components within 6 domains. The Refractory Inflammatory Arthritis definition can be operationalised as a classification tool using 22 routinely collected data points to identify those who need further targeted support and treatment. We have applied a biopsychosocial formulation model for Refractory Inflammatory Arthritis covering perpetuating and protective factors to guide management strategies and present wider contextual factors involved in the experience of Refractory Inflammatory Arthritis. How this study might affect research, practice or policy The development of the Refractory Inflammatory Arthritis definition presented here included consideration of content and discriminant validity indicators to provide a clinical and research tool to appropriately classify and measure Refractory Inflammatory Arthritis with alignment to routinely used measures.
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 enseignantsNi 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.
Scores du classifieur distillé par catégorie (deux têtes)
| Catégorie | Codex | Gemma |
|---|---|---|
| Métarecherche | 0,056 | 0,060 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,002 |
| Bibliométrie | 0,004 | 0,002 |
| Études des sciences et des technologies | 0,002 | 0,002 |
| Communication savante | 0,004 | 0,003 |
| Science ouverte | 0,002 | 0,006 |
| Intégrité de la recherche | 0,001 | 0,002 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,008 | 0,001 |
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.
score_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 découleClassification
machine, non validéePrédiction automatique; un appel candidat d’une seule source (Gemma direct ou Codex distillé), pas un consensus.
Le détail, modèle par modèle et score par score, se trouve en fin de page sous « Comment cette classification a été obtenue ».