Division of Neuro and Inflammation Sciences, Department of Clinical and Experimental Medicine, Linköping University, Linköping, Sweden.
Division of Occupational Therapy, Department of Social and Welfare Studies, Linköping University, Linköping, Sweden.
Lupus. 2020 May;29(6):625-630. doi: 10.1177/0961203320912338. Epub 2020 Mar 18.
Definitions of remission in systemic lupus erythematosus (SLE; DORIS (1A/1B/2A/2B)), disease activity assessments and patient-reported outcome measures (PROMs) are useful in shared decision making between patients with SLE and physicians. We used longitudinal registry data from well-characterized Swedish patients with recent-onset SLE to explore potential correlations between DORIS status or disease activity, and PROMs.
Patients from the Clinical Lupus Register in North-Eastern Gothia, Sweden, who fulfilled the 1982 American College of Rheumatology and/or the 2012 Systemic Lupus International Collaborating Clinics classification criteria without prior organ damage, were enrolled at diagnosis. Data on treatments, serology, remission status (DORIS), disease activity (SLE Disease Activity Index-2000 (SLEDAI-2K)) and PROMs (quality of life: EuroQoL-5 Dimensions (EQ-5D); pain intensity, fatigue and well-being: visual analog scale (VAS) 0–100 mm) were collected during rheumatology clinic visits at months 0 (diagnosis), 6, 12, 24, 36, 48 and 60. Correlations were assessed using Pearson correlation and/or beta regression coefficients.
A total of 41 patients were enrolled (median age = 39 years, 80% female, 85% white). Achievement of DORIS 1A and 2A (neither of which includes serology) significantly correlated with all PROMs (EQ-5D: ≤ 0.02; pain: = 0.0001; fatigue: = 0.0051; well-being: < 0.0001). Disease activity measures were correlated with VAS pain intensity ( < 0.03) and VAS well-being ( < 0.04).
Our findings illustrate the importance of the interplay between remission, disease activity assessments and PROMs. PROMs may be a useful tool in clinical practice, being administered prior to patient visits to streamline clinical care.
在系统性红斑狼疮（SLE；DORIS（1A/1B/2A/2B））患者和医生之间进行共同决策时，SLE 的缓解定义、疾病活动评估和患者报告的结局测量（PROM）非常有用。我们使用来自瑞典近期发病的 SLE 患者的特征明确的纵向登记数据，探讨了 DORIS 状态或疾病活动与 PROM 之间的潜在相关性。
从瑞典东北哥特兰临床狼疮登记处招募符合 1982 年美国风湿病学会和/或 2012 年系统性红斑狼疮国际合作临床分类标准且无先前器官损害的患者，在诊断时入组。在风湿病门诊就诊时收集了关于治疗、血清学、缓解状态（DORIS）、疾病活动（SLE 疾病活动指数-2000（SLEDAI-2K））和 PROMs（生活质量：欧洲五维健康量表（EQ-5D）；疼痛强度、疲劳和幸福感：视觉模拟量表（VAS）0-100mm）的数据，时间点为 0 个月（诊断）、6 个月、12 个月、24 个月、36 个月、48 个月和 60 个月。使用 Pearson 相关系数和/或 beta 回归系数评估相关性。
共纳入 41 例患者（中位年龄 39 岁，80%为女性，85%为白人）。达到 DORIS 1A 和 2A（均不包括血清学）与所有 PROMs 显著相关（EQ-5D：≤0.02；疼痛：=0.0001；疲劳：=0.0051；幸福感：<0.0001）。疾病活动测量与 VAS 疼痛强度（<0.03）和 VAS 幸福感（<0.04）相关。
我们的研究结果表明缓解、疾病活动评估和 PROMs 之间相互作用的重要性。PROMs 可能是临床实践中的有用工具，在患者就诊前进行管理，以简化临床护理。
