Castrejón Isabel, Cano Laura, Cuadrado María José, Borrás Joaquín, Galindo Maria, Salman-Monte Tarek C, Amorós Carlos, San Román Carmen, Cabezas Isabel, Comellas Marta, Muñoz Alejandro
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.
Enfermería Reumatología, H. Regional de Málaga, Málaga, Spain.
BMC Rheumatol. 2024 Jul 16;8(1):31. doi: 10.1186/s41927-024-00401-x.
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.
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.
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.
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.
系统性红斑狼疮（SLE）可能会对患者的生活质量、社会关系和工作效率产生重大影响。在日常护理中使用患者报告结局测量（PROMs）有助于了解疾病负担，以指导SLE的管理并优化疾病控制。我们旨在从医疗保健专业人员和患者的角度探讨在日常护理中使用PROMs监测SLE患者的现状、适用性和可行性。
一个科学委员会在与患者进行焦点小组讨论和文献综述的基础上，制定了一份德尔菲问卷，其中包括22条陈述，涉及：1）PROMs在日常护理中的使用（n = 2）；2）PROMs在SLE管理中的应用（n = 13）；3）SLE患者的多学科管理（n = 4）；4）患者赋权方面（n = 3）。第2 - 4节中的陈述从三个角度进行评估：当前使用情况、适用性和可行性（根据现有资源）。对于每条陈述，小组成员使用7点李克特量表指定他们的同意程度。当≥70%的小组成员对每条陈述表示同意（6、7）或不同意（1、2）时，达成共识。
59名医疗保健专业人员和16名SLE患者参与了德尔菲轮次。就PROMs对改善SLE管理的价值（83%）、医疗保健专业人员的关键作用（77%）以及连接电子病历的数字工具对促进和便利PROMs收集的必要性（85%）达成了共识。临床实践中最常用的PROMs是疼痛（56%）、患者整体评估（44%）和疲劳（39%），均采用视觉模拟量表。小组成员一致认为需要实施多学科会诊（79%）、统一补充检查（88%）、将药剂师纳入医疗团队（70%）以及开展家庭药物配给和知情远程药学项目（72%），以提高SLE患者的护理质量。根据小组成员的说法，患者协会（82%）和护士（80%）对于教育和培训患者使用PROMs以增强患者赋权至关重要。
尽管疼痛、疲劳和整体评估被认为是最可行的，但PROMs在西班牙的日常护理中并未得到广泛应用。目前的德尔菲共识可为其实施提供路线图，这是SLE管理的关键。
