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Factors Associated With Delay in the Diagnosis and Treatment of Systemic Lupus Erythematosus: A Qualitative Study
Amaranta Manrique de Lara1, María Fernanda Ramírez-Flores2, Tirsa Colmenares-Roa3
1Rheumatology Unit, Hospital General de México "Dr. Eduardo Liceaga".
Background/Objective:
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease with heterogeneous clinical manifestations and high morbidity and mortality. Understanding delays in SLE care requires considering both patient experiences and health care system factors. Based on the narratives of Mexican patients and rheumatologists from diverse regions and health care settings, this study examines delays in SLE care in their country. The analysis focuses on health care system components, and their associated barriers and facilitators.
Methods:
Pragmatic qualitative study using semistructured interviews with patients and focus groups with rheumatologists. Participants were selected to reflect gender, clinical, and ethnic diversity. Data were analyzed using thematic and narrative approaches, classifying factors as barriers, facilitators, or mitigators, and reconstructing timelines of diagnostic and treatment delays.
Results:
A total of 49 patients and 50 rheumatologists participated. Five main themes emerged: availability, accessibility, acceptability, quality of care, and disease-associated characteristics. Barriers included a shortage of specialists, centralized services, financial constraints, limited diagnostic resources, cultural and ethical gaps, and poor coordination across care levels. Facilitators and mitigators included access to full or partial health care coverage, private care, patient advocacy, and disease visibility. Timelines revealed critical points of delay, often influenced by structural and system-level deficiencies rather than individual patient behavior.
Conclusion:
Delays in SLE care in Mexico are multifactorial, primarily driven by health care system limitations. Addressing these delays requires integrated strategies that enhance access, quality, cultural competence, and ethical patient-centered care, alongside structural interventions to reduce inequities in the health care system.
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