Unmet Needs in the Care of Systemic Lupus Erythematosus

Manrique de Lara A.; Peláez Ballestas I.d.P.; Mendoza-Pinto C.; Ugarte-Gil M.; Muñoz-Louis R.; Díaz-Cuiza P.E.; Guevara-Pacheco S.; Chacón-Díaz R.; Londoño-Patiño J.D.; Guzmán-Melgar G.M.; Escalante-Mendoza I.C.; Cachafeiro-Vilar A.; Bermúdez-Marrero W.M.; Ramírez-Hernández N.; Reyes-Llerena G.A.; Rojano-Rada J.; Cifuentes-Alvarado M.E.; Esquivel-Valerio J.A.; Massardo L.; Vázquez G.; Acosta-Colman I.; Silveira G.; Pons-Estel G.; Pons-Estel B.A. · Journal of Clinical Rheumatology (2026) · DOI: 10.1097/rhu.0000000000002304

Resumen

Background: – Diagnosis and treatment of systemic lupus erythematosus (SLE) are often delayed in Latin America due to barriers at the patient, provider, and health care system levels. Methods: – This qualitative study, conducted in 16 countries, explored the experiences and recommendations of persons with SLE and rheumatologists to identify key needs and strategies to improve care. Semistructured interviews and focus groups were analyzed thematically. Results: – Six main themes emerged: (1) education and training, (2) access to specialized care, (3) health care system organization, (4) awareness, (5) patient organizations, and (6) research. Participants underscored the need to strengthen professional competencies, decentralize care, reduce administrative barriers, and raise awareness among decision-makers and society. Conclusions: – The perspectives of persons with SLE and rheumatologists converge on the urgent need for coordinated, equitable, and patient- and caregiver-centered approaches to SLE care. Implementing these recommendations—through improved education, health care system reform, advocacy, and research—could substantially reduce diagnostic and treatment delays and improve outcomes for people living with SLE in Latin America.

Instituciones: Universidad Científica del Sur