{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,4]],"date-time":"2026-06-04T05:29:50Z","timestamp":1780550990418,"version":"3.54.1"},"reference-count":36,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2024,4,19]],"date-time":"2024-04-19T00:00:00Z","timestamp":1713484800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,4,19]],"date-time":"2024-04-19T00:00:00Z","timestamp":1713484800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"GSK","award":["GSK Study 207353"],"award-info":[{"award-number":["GSK Study 207353"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Adv Rheumatol"],"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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 (\u2212\u20090.117, <jats:italic>p<\/jats:italic>\u2009=\u20090.042), Systemic Lupus International CollaboratingClinics\/AmericanCollegeofRheumatology Damage Index (\u2212\u20090.115, <jats:italic>p<\/jats:italic>\u2009=\u20090.046), medications\/day for multiple co-morbidities (\u2212\u20090.272, <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001), SLE-specific drugs\/day (\u2212\u20090.113, <jats:italic>p<\/jats:italic>\u2009=\u20090.051), and lost productivity (\u2212\u20090.570, <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001). For the mental component, a negative correlation was observed with medications\/day for multiple co-morbidities (\u2212\u20090.272, <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001), SLE-specific medications\/day (\u2212\u20090.113, <jats:italic>p<\/jats:italic>\u2009=\u20090.051), and missed appointments (\u2212\u20090.232, <jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001). 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 (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001), and inflammatory monitoring (erythrocyte sedimentation rate or C-reactive protein) reduced expenditure by 0.381 times (<jats:italic>p<\/jats:italic>\u2009&lt;\u20090.001).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s42358-024-00369-9","type":"journal-article","created":{"date-parts":[[2024,4,19]],"date-time":"2024-04-19T08:01:51Z","timestamp":1713513711000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Characterization of the patterns of care, access, and direct cost of systemic lupus erythematosus in Brazil: findings from the Macuna\u00edma study"],"prefix":"10.1186","volume":"64","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2264-0442","authenticated-orcid":false,"given":"Mirhelen Mendes","family":"de Abreu","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Odirlei Andre","family":"Monticielo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vander","family":"Fernandes","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dalianna Luise Andrade Souto","family":"Rodrigues","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cristhiane Almeida Leite","family":"da Silva","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexandre Cristov\u00e3o","family":"Maiorano","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fernando dos Santos","family":"Beserra","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Flavia Rachel Moreira","family":"Lamar\u00e3o","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bruna Medeiros Gon\u00e7alves","family":"de Veras","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nathalie","family":"David","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Magda","family":"Ara\u00fajo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marcelly Cristinny Ribeiro","family":"Alves","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matheus Amaral","family":"Stocco","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fernando Mello","family":"Lima","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Emilly","family":"Borret","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrese Aline","family":"Gasparin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gustavo Flores","family":"Chapacais","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Guilherme Andrade","family":"Bulbol","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Diogo","family":"da Silva Lima","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Nat\u00e1lia Jardim Martins","family":"da Silva","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marta Maria Costa","family":"Freitas","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Blanca Elena Rios Gomes","family":"Bica","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Domingos S\u00e1vio Nunes","family":"de Lima","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marta Maria","family":"das Chagas Medeiros","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,4,19]]},"reference":[{"issue":"5","key":"369_CR1","doi-asserted-by":"publisher","first-page":"695","DOI":"10.1016\/j.berh.2012.08.006","volume":"26","author":"P Panopalis","year":"2012","unstructured":"Panopalis P, Clarke AE, Yelin E. 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Written informed consent was obtained from each patient.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"MMdA has received grant\/research support from GSK, Amgen, and Pfizer; and consulting fees from GSK, Pfizer, AstraZeneca, Novartis, Libbs, and Amgen. OAM has received consulting fees and honoraria from AbbVie, Apsen, AstraZeneca, BMS, Boehringer, GSK, Janssen, Novartis, and UCB. VF has received grant\/research support from GSK and Novartis; and consulting fees from Janssen and Novartis. FRML, BMGdV, ND, and MA are employees of GSK. DLASR, CALdS, ACM, FdSB, MCRA, MAS, FML, EB, AAG, GFC, GAB, DdSL, NJMdS, MMCF, BERGB, DSNdL, and MMdCM have nothing to disclose.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"30"}}