Delays in Lupus Diagnosis and Treatment in the Southern Cone: A Qualitative Study of Patient and Rheumatologist Perspectives.

BACKGROUND/

OBJECTIVE

To explore experiences with diagnostic and treatment delays in systemic lupus erythematosus (SLE), with a focus on barriers and facilitators, as reported by rheumatologists and patients from 4 Latin American Southern Cone countries (Argentina, Chile, Paraguay, and Uruguay).

MATERIALS AND

METHODS

A pragmatic qualitative approach was employed, consisting of in-depth interviews with patients and focus groups with rheumatologists and internists. The study was guided by 2 complementary conceptual frameworks: the World Health Organization's (WHO) right-to-health framework and Levesque's patient-centered access-to-care model. A convenience sampling strategy was used. Qualitative data were thematically analyzed using ATLAS.ti.

RESULTS

A total of 34 patients, most with longstanding disease, and predominant cutaneous, articular, and renal involvement, and 33 physicians from both public and private health care sectors participated in the study. The analysis identified 6 key dimensions influencing timely access to care: accessibility (including beliefs and costs), disease presentation (with nonspecific or mild forms leading to a delay in diagnosis), availability of resources (specialists, diagnostic tools, treatments), acceptability (attitudes of health care providers), quality of care, and affordability. In addition to these barriers, several facilitating factors were identified. These included the presence of trained health care professionals, the availability of treatments through specific national programs, and individual-level resources such as patient education and financial means.

CONCLUSION

Although each country presents distinct health care characteristics, common systemic challenges, such as fragmentation, geographic disparities, and inconsistent institutional support, were evident. This study provides critical insights into the complex interplay of structural and individual-level factors influencing access to care for patients with lupus and highlights key areas for future policy and health care interventions.