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

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.