Rheumatology Research Group, School of Immunity and Infection, University of Birmingham, Edgbaston, Birmingham B15 2TT, UK.
Rheumatology (Oxford). 2013 Dec;52(12):2292-301. doi: 10.1093/rheumatology/ket300. Epub 2013 Sep 18.
The objective of this study was to explore the burden of SLE and its effect on patients' lives.
The Lupus European Online (LEO) survey included patient-designed questions on demographics, SLE diagnosis, and the impact of SLE on careers. Three SLE-specific patient-reported outcome (PRO) questionnaires were also completed: the Lupus Quality of Life (LupusQoL), the Fatigue Severity Scale (FSS), and the Work Productivity and Activity Impairment (WPAI)-Lupus v2.0. The survey was available online in five languages from May through August 2010. All self-identified SLE participants were eligible to respond. Survey results were analysed using descriptive statistics. Multivariate linear regression explored factors contributing to impaired productivity.
Of the 2070 European SLE patients completing the survey, 93.1% were women, 86.7% were aged <50 years and 71.8% had a college or university education. More than two-thirds of respondents (69.5%) reported that SLE affected their careers; 27.7% changed careers within a year of diagnosis. All LupusQoL domains (score range 0-100) were impaired, with fatigue (median domain score 43.8) being the most affected and intimate relationships (median domain score 75.0) the least. Most patients (82.5%) reported fatigue (FSS score ≥4). Productivity was impaired across all WPAI domains, both at work and in general activities. Fatigue, an inability to plan and reduced physical health were significantly associated with impaired productivity. Patients whose careers were affected by SLE had worse health-related quality of life, more fatigue and worse productivity than patients whose careers were not affected.
LEO survey respondents reported that SLE negatively affects their daily lives, productivity and career choices.
本研究旨在探讨系统性红斑狼疮（SLE）的负担及其对患者生活的影响。
狼疮欧洲在线（LEO）调查包括患者设计的人口统计学、SLE 诊断以及 SLE 对职业影响的问题。还完成了三种 SLE 特定的患者报告结局（PRO）问卷：狼疮生活质量（LupusQoL）、疲劳严重程度量表（FSS）和工作生产力和活动障碍（WPAI）-狼疮 v2.0。该调查于 2010 年 5 月至 8 月在五个国家/地区以在线形式提供，所有自我识别的 SLE 参与者均有资格回答问题。使用描述性统计方法分析调查结果。多元线性回归探讨了导致生产力受损的因素。
在完成调查的 2070 名欧洲 SLE 患者中，93.1%为女性，86.7%年龄<50 岁，71.8%受过大学或大学教育。超过三分之二的受访者（69.5%）报告 SLE 影响了他们的职业；27.7%在诊断后一年内改变了职业。所有 LupusQoL 领域（评分范围 0-100）均受损，疲劳（中位数领域评分 43.8）受影响最大，亲密关系（中位数领域评分 75.0）受影响最小。大多数患者（82.5%）报告疲劳（FSS 评分≥4）。所有 WPAI 领域的生产力均受损，包括工作和一般活动。疲劳、无法计划和身体健康状况恶化与生产力受损显著相关。SLE 影响职业的患者的健康相关生活质量、疲劳和生产力均比职业不受影响的患者差。
LEO 调查受访者报告 SLE 对他们的日常生活、生产力和职业选择产生负面影响。
