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◆ JCR Journal of Clinical Rheumatology2025-12-08· Medicine

Barriers and Facilitators Associated With Delays in the Diagnosis and Treatment of Lupus: Insights From Patients and Rheumatologists From the Andean/Bolivarian Region

Ana Ospina-Caicedo, Yurilís Fuentes-Silva, Kelly Escobar-Jimenez, Romina Payan-Castillejos, Manuel F. Ugarte‐Gil, Patricia E. Díaz-Cuiza, Sergio Guevara-Pacheco, Ivan L. Stekman, Amaranta Manrique de Lara, Ivonne del Cisne Quezada-López, Edgar A. Castro-Franco, Jesús G. Ballesteros, Irama Maldonado, Gloria Vázquez, Sandra Y. Martinez-Gomez, María del Carmen Ochoa, Carlota Acosta, Jorge Hernán Izquierdo, Ericka V. Sarabia-Chavez, Nataly Liduvina Beleño-Epieyu, Cecilia Camacho, Luisa Ortega-Latan, Carolina Espinosa-Escobar, Tirsa Colmenares‐Roa, Danith Medina-Bornachera, Keisy Orduz-Uribe, Alexander Serna-Paz, Jennyffer Vélez-Martínez, Marylin Parra-Martínez, Rómulo Villacís-Tamayo, Susana Lucero Revollo, Juan P. Gómez-Alconz, Rosana Quintana, Ingris Peláez‐Ballestas

原始摘要(英文原文)· Original abstract
ABSTRACT: Systemic lupus erythematosus (SLE) is difficult to diagnose and treat due to its heterogeneity. In the Andean/Bolivarian Region (comprising Bolivia, Colombia, Ecuador, Peru, and Venezuela), fragmented health care systems, limited access to specialists, and social inequities further exacerbate these challenges. OBJECTIVE: To examine the barriers and facilitators contributing to delays in the diagnosis and treatment of SLE from the perspectives of patients and rheumatologists. METHODS: Qualitative study conducted between January 2024 and April 2025, comprising interviews with 59 patients and focus groups with 76 rheumatologists across five countries. Data were thematically analyzed using the World Health Organization (WHO) right-to-health framework (availability, accessibility, acceptability, quality) and emerging themes. RESULTS: Seven major themes influence delay. Availability: shortages of rheumatologists, laboratory tests, and medications. Accessibility: stigma, geographic, cultural, and socioeconomic barriers, as well as self-medication. Acceptability: gender bias and lack of provider sensitivity. Quality: inadequate training in primary care, poor coordination, fragmented care, and excessive bureaucracy. Disease characteristics: heterogeneity and severity. Migration: cross-border mobility facilitated access to medications but introduced new barriers. Finally, health inequity is an overarching theme that explains delay. Facilitators included rheumatology training, multidisciplinary care, and public health coverage. CONCLUSIONS: Delays in SLE care reflect limitations within the health system, social stigma, and inequities. Strengthening primary care training, streamlining administrative processes, and fostering patient-centered, multidisciplinary approaches are critical. In addition, regional and transnational health policies are needed to guarantee timely and equitable access to diagnosis and treatment of SLE.
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