Patient-reported outcome measures for systemic lupus erythematosus: an expert Delphi consensus to guide implementation in routine care

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• dc.contributor.author Castrejón, Isabel
• dc.contributor.author Cano, Laura
• dc.contributor.author Cuadrado, María José
• dc.contributor.author Borrás, Joaquín
• dc.contributor.author Galindo, Maria
• dc.contributor.author Salman-Monte, Tarek Carlos
• dc.contributor.author Amorós, Carlos
• dc.contributor.author San Román Gutiérrez, Carmen
• dc.contributor.author Cabezas, Isabel
• dc.contributor.author Comellas, Marta
• dc.contributor.author Muñoz, Alejandro
• dc.date.accessioned 2025-03-07T07:05:31Z
• dc.date.available 2025-03-07T07:05:31Z
• dc.date.issued 2024
• dc.description.abstract Background: Systemic lupus erythematosus (SLE) may result in great impact on patients' quality of life, social relationships, and work productivity. The use of patient-reported outcome measures (PROMs) in routine care could help capture disease burden to guide SLE management and optimize disease control. We aimed to explore the current situation, appropriateness, and feasibility of PROMs to monitor patients with SLE in routine care, from healthcare professionals' and patients' perspectives. Methods: A scientific committee developed a Delphi questionnaire, based on a focus group with patients and a literature review, including 22 statements concerning: 1) Use of PROMs in routine care (n = 2); 2) PROMs in SLE management (n = 13); 3) Multidisciplinary management of patients with SLE (n = 4), and 4) Aspects on patient empowerment (n = 3). Statements included in Sects. 2-4 were assessed from three perspectives: current use, appropriateness, and feasibility (with currently available resources). For each statement, panellists specified their level of agreement using a 7-point Likert scale. A consensus was reached when ≥ 70% of the panellists agreed (6,7) or disagreed (1,2) on each statement. Results: Fifty-nine healthcare professionals and 16 patients with SLE participated in the Delphi-rounds. A consensus was reached on the value of PROMs to improve SLE management (83%) and the key role of healthcare professionals (77%) and the need for a digital tool connected to the electronic medical record (85%) to promote and facilitate PROMs collection. PROMs most frequently used in clinical practice are pain (56%), patient's global assessment (44%) and fatigue (39%), all on visual analogue scales. Panellists agreed on the need to implement multidisciplinary consultation (79%), unify complementary tests (88%), incorporate pharmacists into the healthcare team (70%), and develop home medication dispensing and informed telepharmacy programmes (72%) to improve quality of care in patients with SLE. According to panellists, patient associations (82%) and nurses (80%) are critical to educate and train patients on PROMs to enhance patient empowerment. Conclusions: Although pain, fatigue, and global assessment were identified as the most feasible, PROMs are not widely used in routine care in Spain. The present Delphi consensus can provide a road map for their implementation being key for SLE management.
• dc.format.mimetype application/pdf
• dc.identifier.citation Castrejón I, Cano L, Cuadrado MJ, Borrás J, Galindo M, Salman-Monte TC, et al. Patient-reported outcome measures for systemic lupus erythematosus: an expert Delphi consensus to guide implementation in routine care. BMC Rheumatol. 2024 Jul 16;8(1):31. DOI: 10.1186/s41927-024-00401-x
• dc.identifier.doi http://dx.doi.org/10.1186/s41927-024-00401-x
• dc.identifier.issn 2520-1026
• dc.identifier.uri http://hdl.handle.net/10230/69845
• dc.language.iso eng
• dc.publisher BioMed Central
• dc.relation.ispartof BMC Rheumatol. 2024 Jul 16;8(1):31
• dc.rights © The Author(s) 2024, corrected publication 2024. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
• dc.rights.accessRights info:eu-repo/semantics/openAccess
• dc.rights.uri http://creativecommons.org/licenses/by/4.0/
• dc.subject.keyword Delphi
• dc.subject.keyword Patient-reported outcome measures
• dc.subject.keyword Quality of life
• dc.subject.keyword Systemic lupus erythematosus
• dc.title Patient-reported outcome measures for systemic lupus erythematosus: an expert Delphi consensus to guide implementation in routine care
• dc.type info:eu-repo/semantics/article
• dc.type.version info:eu-repo/semantics/publishedVersion