Notice bibliographique
Résumé
Background: Rheumatological diseases have a strong impact on the lives of those affected. They have a clinical impact due to often challenging symptoms, but also psychological and social effects because they are chronic, systemic diseases. Additionally, the therapies can have side effects, and the diagnostic pathway can sometimes take a long time, accompanied by the uncertainty that comes with not having a diagnosis. Fortunately, in recent years, research has better understood the mechanisms underlying numerous rheumatological diseases, identified the role of inflammation and therapeutic targets, and developed innovative drug classes that can block the inflammatory cascade and lead to remission, if not cure. The goal is to prevent disease progression and disability. This new scenario makes it necessary to recount the changes in the treatment and diagnostic paradigm and, therefore, also to revise the language used to talk about rheumatological diseases. The language must adapt to innovation and emerging needs and to the increased awareness of patients, who today must be more active participants in their treatment pathway. Objectives: The vocabulary of rheumatology is and educational project promotes by the APMARR National Association of People with Reumatological and Rare Diseases to help patients navigate the wealth of information found on the web. It provides them with the tools to become protagonists of their own care pathway, exploring the terms that accompany the world of rheumatology. These terms come from the scientific sphere, including those related to drugs and biomedical research, but also from the emotional, psychological, cultural, and social spheres. Over the years, these terms have become cornerstones of care, such as "therapeutic alliance", "multidisciplinary approach", "adaptation", and "compliance". This project is aimed at patients and caregivers, with the goal of familiarizing them with the lexicon of rheumatology and making the concept of empowerment and engagement tangible. Methods: The Vocabulary of Rheumatology started in 2023 with a survey administered to the APMARR community (members, patients, caregivers) aimed at identifying the word that every person with rheumatological disease and their caregiver should know. The project developed through several phases: •Identification and selection of 50 key words •Creation of a dedicated section on APMARR's institutional website •Recording of explanatory videos, published on APMARR's YouTube channel, featuring rheumatology specialists and nurses explaining medical-scientific terms, as well as patients and caregivers explaining terms related to the emotional, social, and affective spheres. •Organization of a concluding in-depth webinar •Production of an online booklet as a vocabulary, listing approximately 90 words important in rheumatology for patients. Results: The project, which involved the participation of both medical personnel and patients and their caregivers, examined about 50 selected words, thanks to the preliminary survey, that were important for patients and caregivers related to their diagnosis and treatment in rheumatology. The explanatory videos by experts, doctors, nurses, psychologists, patients, and caregivers, who explained each word in the new rheumatology vocabulary, generated around 57,500 views and over 900,000 impressions. The concluding webinar broadcast on APMARR's channels generated around 87 views on YouTube and 423 on Facebook. Figure 1 Figure 2 Conclusion: APMARR has developed a new Vocabulary of Rheumatology to educate and inform patients and caregivers. The aim is to provide an interactive, user-friendly tool to convey correct, authoritative, and expertly edited information, helping them become familiar with the rheumatology landscape and making the concept of empowerment tangible. REFERENCES: NIL . Acknowledgements: NIL . Disclosure of Interests: None declared . © The Authors 2025. This abstract is an open access article published in Annals of Rheumatic Diseases under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). Neither EULAR nor the publisher make any representation as to the accuracy of the content. The authors are solely responsible for the content in their abstract including accuracy of the facts, statements, results, conclusion, citing resources etc.
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 | 0,002 | 0,008 |
| Méta-épidémiologie (sens strict) | 0,001 | 0,000 |
| Méta-épidémiologie (sens large) | 0,001 | 0,000 |
| Bibliométrie | 0,001 | 0,002 |
| Études des sciences et des technologies | 0,002 | 0,003 |
| Communication savante | 0,006 | 0,006 |
| Science ouverte | 0,001 | 0,003 |
| Intégrité de la recherche | 0,002 | 0,004 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,148 | 0,094 |
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 ».