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

Autor: Castrejón I; Departamento de Medicina, Servicio de Reumatología, Hospital General Universitario Gregorio MarañónInstituto de Investigación Sanitaria Gregorio MarañónUniversidad Complutense de Madrid, C. del Dr. Esquerdo, 46, 28007, Madrid, Spain. isabelcastrejonf@gmail.com., Cano L; Enfermería Reumatología, H. Regional de Málaga, Málaga, Spain., Cuadrado MJ; Servicio de Reumatología, H. Clínica Universitaria de Navarra, Madrid, Spain., Borrás J; Farmacia Hospitalaria. H. de Sagunto, Valencia, Spain., Galindo M; Servicio de Reumatología, H. 12 de Octubre, Madrid, Spain., Salman-Monte TC; Servicio de Reumatología, H. del Mar, Barcelona, Spain., Amorós C; GlaxoSmithKline, Madrid, Spain., San Román C; GlaxoSmithKline, Madrid, Spain., Cabezas I; Outcomes'10, Castellón de La Plana, Spain., Comellas M; Outcomes'10, Castellón de La Plana, Spain., Muñoz A; Servicio de Reumatología, H. Universitario Virgen del Rocío, Sevilla, Spain.
Jazyk: angličtina
Zdroj: BMC rheumatology [BMC Rheumatol] 2024 Jul 16; Vol. 8 (1), pp. 31. Date of Electronic Publication: 2024 Jul 16.
DOI: 10.1186/s41927-024-00401-x
Abstrakt: 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.
(© 2024. The Author(s).)
Databáze: MEDLINE