068 Asking the right questions? Rheumatoid arthritis patients’ views on rheumatology consultations: results of an online survey
Notice bibliographique
Résumé
Background: Intensive, goal-driven treatment of rheumatoid arthritis (RA) has led to improved disease activity outcomes. However, focusing on abrogation of inflammation may lead to other important issues being overlooked. We conducted an online study of RA patients to find out their views on which issues were being addressed during rheumatology consultations. Methods: An online survey of patients’ views was devised with input from consultant rheumatologists, representatives of the National Rheumatoid Arthritis Society (NRAS) and a small focus group of RA patients. The survey asked questions about which factors were most likely to be discussed and examined during rheumatology clinic appointments; their and their rheumatologist’s awareness of treatment goals and whether rheumatology appointments covered all of the issues that they considered important. The survey was distributed by NRAS by email and social media and results were interpreted with further assistance from NRAS and the patient focus group. Results: There were 1,287 respondents; 86% female, median age 62 years (IQR 54-69), median duration 10 years (IQR 5-18). 89% appointments were with a consultant rheumatologist or specialist nurse and most lasted between 6-20 minutes. Patients were asked about things that mattered to them most (40%) and all the time (24%) and these matters were often prioritised most (42%) or all the time (20%). Rheumatologists seemed most interested in asking about symptoms of pain, stiffness, swelling and medication rather than symptoms of fatigue, mood, work, functional ability or family life/sexuality. Joint examinations were reported most/all the time in 81% of appointments, usually for tender or swollen joints. 65% respondents were aware of disease activity scores being calculated and 50% were informed of the result most/all the time. 58% respondents felt their RA was adequately assessed. Respondents reported universally low scores for how well their ability to self-care, mobilise, work, exercise, relationships and mood were assessed. 57% respondents had never discussed disease activity goals and 74% had not discussed their personal goals with their rheumatologist. Conclusion: Patients report that rheumatology appointments appear focused on assessing signs and symptoms of inflammation. However, there may be an important unmet need to address other factors since treatment and personal goals are discussed in the minority of appointments and patients report that non-articular symptoms are infrequently and poorly assessed. Disclosures: J. Dale: Grants/research support; NHS Lanarkshire, NHS Research Scotland. Other; Abbvie. S. Clements: None. K. D: None. H. L: None. A. S: None. L. Connell: None. C. Jacklin: None. A. Bosworth: None.
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 | 0,004 | 0,014 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,000 |
| Méta-épidémiologie (sens large) | 0,000 | 0,001 |
| Bibliométrie | 0,001 | 0,001 |
| Études des sciences et des technologies | 0,001 | 0,000 |
| Communication savante | 0,001 | 0,001 |
| Science ouverte | 0,000 | 0,001 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,004 | 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 ».