Advances in Rheumatology (Apr 2024)

Characterization of the patterns of care, access, and direct cost of systemic lupus erythematosus in Brazil: findings from the Macunaíma study

  • Mirhelen Mendes de Abreu,
  • Odirlei Andre Monticielo,
  • Vander Fernandes,
  • Dalianna Luise Andrade Souto Rodrigues,
  • Cristhiane Almeida Leite da Silva,
  • Alexandre Cristovão Maiorano,
  • Fernando dos Santos Beserra,
  • Flavia Rachel Moreira Lamarão,
  • Bruna Medeiros Gonçalves de Veras,
  • Nathalie David,
  • Magda Araújo,
  • Marcelly Cristinny Ribeiro Alves,
  • Matheus Amaral Stocco,
  • Fernando Mello Lima,
  • Emilly Borret,
  • Andrese Aline Gasparin,
  • Gustavo Flores Chapacais,
  • Guilherme Andrade Bulbol,
  • Diogo da Silva Lima,
  • Natália Jardim Martins da Silva,
  • Marta Maria Costa Freitas,
  • Blanca Elena Rios Gomes Bica,
  • Domingos Sávio Nunes de Lima,
  • Marta Maria das Chagas Medeiros

DOI
https://doi.org/10.1186/s42358-024-00369-9
Journal volume & issue
Vol. 64, no. 1
pp. 1 – 14

Abstract

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Abstract Background A cost of illness (COI) study aims to evaluate the socioeconomic burden that an illness imposes on society as a whole. This study aimed to describe the resources used, patterns of care, direct cost, and loss of productivity due to systemic lupus erythematosus (SLE) in Brazil. Methods This 12-month, cross-sectional, COI study of patients with SLE (ACR 1997 Classification Criteria) collected data using patient interviews (questionnaires) and medical records, covering: SLE profile, resources used, morbidities, quality of life (12-Item Short Form Survey, SF-12), and loss of productivity. Patients were excluded if they were retired or on sick leave for another illness. Direct resources included health-related (consultations, tests, medications, hospitalization) or non-health-related (transportation, home adaptation, expenditure on caregivers) hospital resources.Costs were calculated using the unit value of each resource and the quantity consumed. A gamma regression model explored cost predictors for patients with SLE. Results Overall, 300 patients with SLE were included (92.3% female,mean [standard deviation (SD)] disease duration 11.8 [7.9] years), of which 100 patients (33.3%) were on SLE-related sick leave and 46 patients (15.3%) had stopped schooling. Mean (SD) travel time from home to a care facility was 4.4 (12.6) hours. Antimalarials were the most commonly used drugs (222 [74.0%]). A negative correlation was observed between SF-12 physical component and SLE Disease Activity Index (− 0.117, p = 0.042), Systemic Lupus International CollaboratingClinics/AmericanCollegeofRheumatology Damage Index (− 0.115, p = 0.046), medications/day for multiple co-morbidities (− 0.272, p < 0.001), SLE-specific drugs/day (− 0.113, p = 0.051), and lost productivity (− 0.570, p < 0.001). For the mental component, a negative correlation was observed with medications/day for multiple co-morbidities (− 0.272, p < 0.001), SLE-specific medications/day (− 0.113, p = 0.051), and missed appointments (− 0.232, p < 0.001). Mean total SLE cost was US$3,123.53/patient/year (median [interquartile range (IQR)] US$1,618.51 [$678.66, $4,601.29]). Main expenditure was medication, with a median (IQR) cost of US$910.62 ($460, $4,033.51). Mycophenolate increased costs by 3.664 times (p < 0.001), and inflammatory monitoring (erythrocyte sedimentation rate or C-reactive protein) reduced expenditure by 0.381 times (p < 0.001). Conclusion These results allowed access to care patterns, the median cost for patients with SLE in Brazil, and the differences across regions driven by biological, social, and behavioral factors. The cost of SLE provides an updated setting to support the decision-making process across the country.

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