DELAY IN DIAGNOSIS AND TREATMENT OF PATIENTS WITH SYSTEMIC LUPUS ERYTHEMATOSUS IN LATIN AMERICA. A MIXED METHODS STUDY
Notice bibliographique
Résumé
PV093 / #304 Poster Topic: AS11 - Epidemiology and Public Health Background/Purpose Systemic lupus erythematosus (SLE) is a complex disease associated with significant early morbidity and mortality. Approximately 30% of patients with SLE experience diagnostic delays, with means ranging from 3 to 5 years. In Latin America (LA), the disparities in healthcare access and availability of specialized consultations across countries underscores the need to establish timelines and evaluate factors impacting key stages in the patients’ healthcare journey. This study aims to describe the process of seeking care, as well as delays in diagnosis and treatment, and to identify associated factors—barriers, facilitators, and patient needs—among SLE patients receiving care at various rheumatology centers in LA. Methods This is a mixed methods (qualitative and quantitative) study in 4 phases with a sequential design, in which research outputs from each phase will serve as the foundation for subsequent phases. Phase 1: Evidence Generation - Identify the process of seeking care and define the concept of diagnostic delay through a systematic literature review and development of an interview guide for patients and rheumatologists. Phase 2: Qualitative Analysis - Describe and analyze the patient journey in SLE from the perspectives of both patients and rheumatologists. Phase 3: Questionnaire Development and Validation - Develop and validate a questionnaire to measure care delays and associated factors. Phase 4: Quantitative Analysis - Use the validated questionnaire to assess diagnostic and treatment delays in SLE patients across LA with a representative patient sample. The project is scheduled for the 2023-2027 period and is funded by a grant from PANLAR and the Latin American Lupus Study Group (GLADEL). Results Seventeen countries in LA are currently participating: Argentina, Bolivia, Chile, Colombia, Cuba, Dominican Republic, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Nicaragua, Panama, Paraguay, Peru, Uruguay, and Venezuela. Quantitative and qualitative systematic reviews been completed, and interview guides for rheumatologists and patients have been developed (Phase 1). Focus groups and in-depth patient interviews are currently underway, simultaneous with qualitative data analysis (Phase 2). Based on a sample design aligned with the epidemiological data of each country, the following activities will be conducted: Phase 2 - 23 focus groups with rheumatologists (an average of 8 participants per country), and 153 individual in-depth patient interviews; Phases 3 and 4 - 150 patients for the pilot test, 450 patients for questionnaire validation, and 13,369 patients for the measurement of diagnostic delays. Conclusions SLE is a heterogeneous disease that is challenging to diagnose and requires early treatment initiation. Patients and rheumatologists agree that delays in SLE diagnosis have specific characteristics, including disease variability, diversity of healthcare systems, educational factors among health professionals and the general population, and sociocultural and economic conditions. Measuring these delays is essential to provide evidence for informed decision making in health policies at both national and regional levels.
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 | 0,011 | 0,019 |
| Méta-épidémiologie (sens strict) | 0,000 | 0,001 |
| Méta-épidémiologie (sens large) | 0,001 | 0,002 |
| Bibliométrie | 0,002 | 0,004 |
| Études des sciences et des technologies | 0,001 | 0,001 |
| Communication savante | 0,002 | 0,002 |
| Science ouverte | 0,001 | 0,002 |
| Intégrité de la recherche | 0,001 | 0,001 |
| Charge utile insuffisante (le modèle a refusé de juger) | 0,002 | 0,000 |
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.
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 ».