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.