GlaxoSmithKline, Research Triangle Park, North Carolina 27709, USA.
Lupus. 2013 Sep;22(10):1077-86. doi: 10.1177/0961203313498795. Epub 2013 Aug 6.
Systemic lupus erythematosus (SLE) is a chronic autoimmune disease characterized by clinical manifestations that can cause diminished activity and productivity. The objectives of this study were to: (a) longitudinally evaluate patient-reported SLE disease activity, and (b) measure work productivity, missed work hours, and associated lost income among employed patients with SLE. Three cohorts (employed subjects with SLE (n = 281), nonemployed subjects with SLE (n = 265), and a control group of employed individuals without SLE (n = 300)) completed a baseline survey. Employed subjects with SLE completed follow-up surveys every two weeks during a six-month period. Measured outcomes included perceived health, disease manifestations and severity, the Lupus Impact Tracker, the Modified Systemic Lupus Activity Questionnaire, and Work Productivity and Activity Impairment Questionnaire. Higher self-reported SLE disease severity was directly associated with experiencing more frequent and more severe symptoms as well as higher levels of lost work time and lost work productivity. Though patient self-assessment may differ from physician's clinical assessment, it is important to incorporate the patient perspective in clinical decision-making to optimally manage SLE patients. Given the evidence associating SLE with work disability and job loss, it may be beneficial for professionals addressing worksite modifications or compensatory strategies to be included as members of SLE medical teams.
系统性红斑狼疮(SLE)是一种慢性自身免疫性疾病,其临床表现可导致活动能力和生产力下降。本研究的目的是:(a)纵向评估患者报告的 SLE 疾病活动度,以及(b)测量 SLE 在职患者的工作生产力、旷工时间和相关收入损失。三个队列(SLE 在职受试者(n=281)、SLE 非在职受试者(n=265)和无 SLE 的在职对照组个体(n=300))完成了基线调查。SLE 在职受试者在六个月的期间内每两周完成一次随访调查。测量结果包括感知健康、疾病表现和严重程度、狼疮影响追踪器、改良系统性红斑狼疮活动问卷和工作生产力和活动障碍问卷。自我报告的 SLE 疾病严重程度越高,与经历更频繁和更严重的症状以及更高的旷工时间和工作生产力损失直接相关。尽管患者的自我评估可能与医生的临床评估不同,但在临床决策中纳入患者的观点对于优化 SLE 患者的管理非常重要。鉴于有证据表明 SLE 与工作能力丧失和失业相关,让处理工作场所调整或补偿策略的专业人员作为 SLE 医疗团队的成员可能会有所帮助。