Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study

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• dc.contributor.author Galindo-Izquierdo, Maria
• dc.contributor.author Borrás, Joaquín
• dc.contributor.author Pérez Ortega, Silvia
• dc.contributor.author Salman-Monte, Tarek Carlos
• dc.contributor.author Vela-Casasempere, Paloma
• dc.contributor.author Rodríguez Almaraz, Esther
• dc.contributor.author Calvo-Alen, Jaime
• dc.contributor.author Álvaro-Gracia, José María
• dc.contributor.author Barbado Ajo, M. Julia
• dc.contributor.author Rubio Renau, Raül
• dc.contributor.author Galvez-Fernandez, Marta
• dc.contributor.author Bahamontes-Rosa, Noemí
• dc.contributor.author Sánchez-Covisa Hernández, Joaquín
• dc.contributor.author Solà Marsiñach, Carlota
• dc.date.accessioned 2025-07-04T06:25:55Z
• dc.date.available 2025-07-04T06:25:55Z
• dc.date.issued 2024
• dc.description.abstract Background and objectives: Systemic lupus erythematosus (SLE) is an autoimmune condition that can highly impact patients' quality of life (QoL). However, there is a lack of knowledge about SLE, affecting the general population and health care professionals (HCPs) alike. This lack of knowledge has negative implications for patients and the healthcare system, worsening prognosis, negatively impacting QoL, and increasing healthcare utilization. The aim of this paper is to draw attention, according to the perspective of the participants of this study, to the lack of awareness of SLE and its consequences in Spain, and to suggest improvements. Patients and methods: This qualitative, descriptive, observational, multicenter, and cross-sectional study included 40 patients with moderate or severe SLE, recruited during their routine visits in six university hospitals in Spain. The study also included 11 caregivers and 9 HCPs. All participants were individually interviewed. Data from the interviews were coded and analyzed thematically by two anthropologists following a phenomenological perspective. Results: Our study identified a lack of disease awareness among primary care physicians, emergency medicine doctors, and other specialists treating SLE symptomatology. This led to diagnostic delays, which had a clinical and emotional impact on patients. Furthermore, symptom awareness was found to be context dependent. Differences in symptom awareness between HCPs and patients led to a mismatch between the severity evaluation made by doctors and patients. Some HCPs did not consider the limitations of the current severity evaluation of SLE, and therefore attributed symptoms potentially caused by SLE to the unfavorable socioeconomic conditions patients lived in. Finally, a lack of social awareness among friends, family members, and romantic partners led to lower social support, increased isolation, and negative physical and emotional impact for patients. Gender differences in the provision of support were identified. Conclusion: This study highlights the need to increase SLE awareness among patients, HCPs, and the broader public in order to improve patient QoL. Being aware of the clinical and emotional impact of such lack of awareness, as well as the role played by context on the patient experience of SLE, is a crucial step towards achieving this goal.
• dc.format.mimetype application/pdf
• dc.identifier.citation Galindo Izquierdo M, Borrás Blasco J, Pérez Ortega S, Salman-Monte TC, Vela-Casasempere P, Rodríguez Almaraz E, et al. Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study. Lupus. 2024 Jun;33(7):663-74. DOI: 10.1177/09612033241242886
• dc.identifier.doi http://dx.doi.org/10.1177/09612033241242886
• dc.identifier.issn 0961-2033
• dc.identifier.uri http://hdl.handle.net/10230/70830
• dc.language.iso eng
• dc.publisher SAGE Publications
• dc.relation.ispartof Lupus. 2024 Jun;33(7):663-74
• dc.rights © The Author(s) 2024. This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri http://creativecommons.org/licenses/by-nc/4.0/
• dc.subject.keyword Awareness
• dc.subject.keyword Patient perspective
• dc.subject.keyword Qualitative study
• dc.subject.keyword Quality of life
• dc.subject.keyword Systemic lupus erythematosus
• dc.title Lack of awareness of systemic lupus erythematosus and its consequences in a cohort of moderate and severe patients in Spain: The LupusVoice study
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion