Journal of clinical rheumatology : practical reports on rheumatic & musculoskeletal diseases · 2025
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.
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Colmenares-Roa Tirsa, Espinosa-Escobar Carolina, Manrique de Lara Amaranta, Peréz Irene, Rosas-Fraga Hugo, Muñoz-Louis Roberto, Bermúdez-Marrero Witjal Manuel, Guzmán-Melgar Gabriela María, Escalante-Mendoza Idania Calixta, Cachafeiro-Vilar Antonio, Cifuentes-Alvarado Mayra Elizabeth, Polanco-Mora Teresandris, Reyes-Baca Deyanira Isabel, Reyes-Llerena Gil Alberto, Blanco-O Isabel, Chacón-Súchite José Anibal, Álvarez Rodamin, Vizcaino-Luna Yaneli, López-Mantecón Ana Marta, Guibert-Toledano Zoila Marlene, Peláez-Ballestas Ingris Del Pilar
Аннотация
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.
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.