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Living with systemic lupus erythematosus in 2024: Latin American experience based on a patient survey

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datacite.rightshttp://purl.org/coar/access_right/c_abf2
dc.contributor.authorQuintana, Rosana
dc.contributor.authorBellomio, Veronica
dc.contributor.authorUgarte, Manuel
dc.contributor.authorFernandez, Diana
dc.contributor.authorNieto, Romina
dc.contributor.authorScolnik, Marina
dc.contributor.authorFunes Soaje, Carmen
dc.contributor.authorAlba, Paula
dc.contributor.authorSaurit, Verónica
dc.contributor.authorGarcia, Mercedes
dc.contributor.authorBerbotto, Guillermo
dc.contributor.authorKerzberg, Eduardo
dc.contributor.authorGómez, Graciela
dc.contributor.authorPison, Cecilia
dc.date.accessioned2025-12-09T21:11:43Z
dc.date.available2025-12-09T21:11:43Z
dc.date.issued2025
dc.description.abstractObjective To assess the burden of systemic lupus erythematosus (SLE) from the perspective of patients in Latin America (LATAM) in 2024. Methods During May 2024, as part of International SLE Awareness Day, the Grupo Latinoamericano de Estudio del Lupus (GLADEL) disseminated an anonymous, bilingual (Spanish/Portuguese) online survey to patients with SLE. The survey, developed by Lupus Europe, was distributed through physicians and patient associations across LATAM and explored sociodemographic characteristics, disease features, treatments, and the impact on daily life. Results A total of 1991 responses from 21 Latin American countries were analyzed (Argentina, Brazil, the Dominican Republic, Chile, and Peru contributing the highest numbers). Most respondents were women (95.2%), with a mean age of 38.6 years (SD 11.6). Overall, 52.1% were married or partnered, 34.0% had completed secondary/vocational education, and 38.8% were employed. Regarding ethnicity, 25.5% identified as Caucasian and 34.4% as Mestizo. A prior alternative diagnosis was reported by 59.7%, with a mean age at diagnosis of 28.8 years (SD 10.6) and a median delay of 1 year (IQR 0–2). The most frequently affected organs were joints (71.4%), skin (47.4%), and kidneys (37.5%). Emotional and sexual life were negatively affected in 43.2%, and 62.1% reported impacts on education or career. Anxiety and/or depression were reported by 60%. Antimalarials, corticosteroids, immunosuppressives, and biologics were used by 80.9%, 55.7%, 59.9%, and 11.1%, respectively. Notably, 67.7% perceived their disease as under control. Conclusion Understanding patient perspectives is essential to evaluate the burden of SLE, and incorporating patient-reported experiences into decision-making should be prioritized.eng
dc.format.mimetypepdf
dc.identifier.citationQuintana, R., Bellomio, V., Ugarte-Gil, M. et al. Living with systemic lupus erythematosus in 2024: Latin American experience based on a patient survey. Clin Rheumatol (2025). https://doi.org/10.1007/s10067-025-07867-1eng
dc.identifier.doihttps://doi.org/10.1007/s10067-025-07867-1
dc.identifier.issn14349949 (Electrónico)
dc.identifier.issn07703198 (Impreso)
dc.identifier.urihttps://hdl.handle.net/20.500.12442/17180
dc.identifier.urlhttps://link.springer.com/article/10.1007/s10067-025-07867-1
dc.language.isoeng
dc.publisherSpringerspa
dc.rightsAttribution-NonCommercial-NoDerivatives 4.0 Internationaleng
dc.rights.accessrightsinfo:eu-repo/semantics/openAccess
dc.rights.urihttp://creativecommons.org/licenses/by-nc-nd/4.0/
dc.sourceClinical Rheumatologyeng
dc.sourceClin Rheumatoleng
dc.subject.keywordsLatin Americaeng
dc.subject.keywordsOutcome assessmenteng
dc.subject.keywordsQuality of lifeeng
dc.subject.keywordsSurveys and questionnaireseng
dc.subject.keywordsSystemic lupus erythematosuseng
dc.titleLiving with systemic lupus erythematosus in 2024: Latin American experience based on a patient surveyeng
dc.type.driverinfo:eu-repo/semantics/article
dc.type.spaArtículo científico
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