EPIDEMIOLOGY AND CLINICAL PROGRESSION OF SYSTEMIC LUPUS ERYTHEMATOSUS AND LUPUS NEPHRITIS IN THE BRAZILIAN PUBLIC HEALTH SYSTEM: A REAL-WORLD STUDY (2012-2024)
Author(s)
Odirlei Monticielo, PhD1, Gabriel Sales, PhD2, Iago D. Silveira, BS3, Henrique Lima, Bachelor3, Clarissa Medeiros, MSc3, Veronica E. Mata, MBA, MSc, PhD4;
1Division of Rheumatology, Department of Internal Medicine, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil, Porto Alegre, Brazil, 2Unifesp, São Paulo, Brazil, 3Produtos Roche Químicos e Farmacêuticos S/A, São Paulo, Brazil, 4Produtos Roche Químicos e Farmacêuticos S/A, Market access & HTA Manager, SAO PAULO, Brazil
1Division of Rheumatology, Department of Internal Medicine, Hospital de Clínicas de Porto Alegre, Universidade Federal do Rio Grande do Sul, Porto Alegre, Brazil, Porto Alegre, Brazil, 2Unifesp, São Paulo, Brazil, 3Produtos Roche Químicos e Farmacêuticos S/A, São Paulo, Brazil, 4Produtos Roche Químicos e Farmacêuticos S/A, Market access & HTA Manager, SAO PAULO, Brazil
OBJECTIVES: To describe the epidemiology, sociodemographics, and clinical course of adult Systemic Lupus Erythematosus (SLE) and Lupus Nephritis (LN) patients >18 years of age treated in the Brazilian Unified Health System (SUS).
METHODS: This retrospective, observational study analyzed anonymized administrative claims data from the Outpatient Information System (SIA-SUS/DATASUS) between 2012-2024. Patients were identified by a primary diagnosis of SLE (ICD-10.M32) and at least one of the following criteria: documented dialysis or renal biopsy; treatment with mycophenolate mofetil/sodium; ≥2 nephrology outpatient visits; treatment with azathioprine, cyclophosphamide, cyclosporine, or rituximab in combination with nephrologist consultation; registration of any pharmacological treatment with kidney disease-related ICD codes (N00-N19); or kidney transplantation-related procedures (T86.1 or Z94.0).
RESULTS: A total of 125,488 SLE patients were identified; 89.7% were female, 49.4% resided in the Southeast, and 85.1% were aged 20-59 years. LN was identified in 20,664 patients (16.5%). Regarding treatments, mycophenolate (59.5%) and azathioprine (37.9%) predominated. Low utilization rates were observed for cyclosporine (5.9%), tacrolimus (4.8%), rituximab (2.1%), cyclophosphamide (0.7%) and methylprednisolone (0.2%). While only 4.8% underwent renal biopsy, 15.9% required dialysis.
CONCLUSIONS: The profile of LN within the SUS highlights advancements in therapeutic access, particularly regarding mycophenolate. However, the study reveals a significant clinical challenge: a substantial proportion of patients in their productive years progress to dialysis. The reported low prevalence of LN and the infrequent use of immunosuppressive treatments (cyclophosphamide/rituximab), appear underestimated when compared to the literature. These discrepancies arise from the study’s design limitations and its reliance on administrative claims data, which do not capture inpatient procedures or therapies. These findings emphasize the urgent need to improve data collection and more comprehensive epidemiological studies to better represent the actual disease burden in Brazil.
METHODS: This retrospective, observational study analyzed anonymized administrative claims data from the Outpatient Information System (SIA-SUS/DATASUS) between 2012-2024. Patients were identified by a primary diagnosis of SLE (ICD-10.M32) and at least one of the following criteria: documented dialysis or renal biopsy; treatment with mycophenolate mofetil/sodium; ≥2 nephrology outpatient visits; treatment with azathioprine, cyclophosphamide, cyclosporine, or rituximab in combination with nephrologist consultation; registration of any pharmacological treatment with kidney disease-related ICD codes (N00-N19); or kidney transplantation-related procedures (T86.1 or Z94.0).
RESULTS: A total of 125,488 SLE patients were identified; 89.7% were female, 49.4% resided in the Southeast, and 85.1% were aged 20-59 years. LN was identified in 20,664 patients (16.5%). Regarding treatments, mycophenolate (59.5%) and azathioprine (37.9%) predominated. Low utilization rates were observed for cyclosporine (5.9%), tacrolimus (4.8%), rituximab (2.1%), cyclophosphamide (0.7%) and methylprednisolone (0.2%). While only 4.8% underwent renal biopsy, 15.9% required dialysis.
CONCLUSIONS: The profile of LN within the SUS highlights advancements in therapeutic access, particularly regarding mycophenolate. However, the study reveals a significant clinical challenge: a substantial proportion of patients in their productive years progress to dialysis. The reported low prevalence of LN and the infrequent use of immunosuppressive treatments (cyclophosphamide/rituximab), appear underestimated when compared to the literature. These discrepancies arise from the study’s design limitations and its reliance on administrative claims data, which do not capture inpatient procedures or therapies. These findings emphasize the urgent need to improve data collection and more comprehensive epidemiological studies to better represent the actual disease burden in Brazil.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
EPH219
Topic
Epidemiology & Public Health
Disease
SDC: Systemic Disorders/Conditions (Anesthesia, Auto-Immune Disorders (n.e.c.), Hematological Disorders (non-oncologic), Pain)