Barriers and Facilitators Associated With Delays in the Diagnosis and Treatment of Lupus: A Qualitative Study of Patients and Rheumatologists in the Central American and Caribbean Region.

BACKGROUND

Timely diagnosis, treatment, and delays in systemic lupus erythematosus (SLE) remain underexplored in the Central America and Caribbean (CAC) region. The objective was to describe and analyze patient-level and health care system-level barriers and facilitators associated with diagnostic and therapeutic delays in SLE, based on experiences of patients and rheumatologists from 6 countries in the CAC region.

METHODS

A qualitative study was conducted in Cuba, the Dominican Republic, Guatemala, Honduras, Nicaragua, and Panama. Patients and rheumatologists were purposively recruited. Data were collected through in-depth interviews and focus groups. Thematic analysis was conducted.

RESULTS

A total of 46 patients and 40 rheumatologists participated. Barriers and facilitators were grouped into 4 themes. Patient-related and context-related delays reflected disease interpretation and health-seeking behaviors: mild or nonspecific manifestations and self-medication delayed care, whereas visible symptoms and a family history of autoimmunity facilitated timely consultation. Health care system-related delay encompassed 3 themes: (a) accessibility-financial precarity, geographic barriers, and medication costs delayed care, though social support and universal coverage (Cuba) facilitated treatment; (2) technical and cultural competence-insufficient provider training and misdiagnoses hindered timely care, while trustful rheumatologist-patient relationships improved adherence; (3) health resources-shortages of specialists, diagnostic tests, and medications were major obstacles.

CONCLUSIONS

Delays in SLE care in CAC are predominantly driven by systemic rather than patient-level factors. Strengthening health system capacity, expanding rheumatology services, and fostering culturally sensitive care are essential to reducing inequities and improving outcomes.