BACKGROUND The utility of generic health-related quality of life (HRQoL) questionnaires in patients with systemic lupus erythematosus (SLE) is uncertain. We compared the performance of generic (SF36) and specific (SLEQOL) HRQoL surveys by examining their associations with the Global Rating of Change (GRC) and SLE clinical indicators. METHODS The study included SLE patients who attended a single-center rheumatology clinic between 2013 and 2017. Patients completed both specific (SLEQOL) and generic (SF36) surveys and rated their GRC compared to the previous visit using a 7-point Likert scale on the same day of routine visits. Based on GRC scores, patients' change in HRQoL was categorized as "no change," "deterioration," or "improvement." Disease activity (SLEDAI-2K), flare, and lupus low disease activity state (LLDAS) were assessed at each visit, and organ damage (SDI) was determined annually. Pairwise correlations between SLEQOL and SF36 components were examined, and associations between GRC status and SLE disease indicators were compared using generalized estimating equations (GEE). RESULTS Three hundred thirty-seven patients with 2062 visits were included in the analysis. SLEQOL correlated significantly with SF36. Patients reported improvements in HRQoL in 58%, deterioration in 15%, and "no change" in 27% of all visits. Compared to the "no change" group, mean SF36 and SLEQOL scores were significantly lower in the deterioration group and higher in the improvement group. The magnitude of changes observed with SLEQOL and SF36 in the deterioration and improvement groups was similar. Patients in LLDAS had significantly higher mean scores in both SLEQOL and SF36. In contrast, patients with active disease, especially those with cutaneous, renal, central nervous system, and musculoskeletal activity, had significantly lower SLEQOL and SF36. Flare and organ damage were also associated with lower SLEQOL and SF36-PCS (physical component) but not with SF36-MCS (mental component). CONCLUSION SLEQOL and SF36 similarly describe HRQoL in SLE. Both instruments demonstrated strong associations with GRC-based deterioration or improvement as well as SLE disease status. LLDAS was associated with improved HRQoL.

中文翻译：

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比较特定（SLEQOL）和通用（SF36）健康相关生活质量问卷的性能，以及它们与系统性红斑狼疮疾病状况的关系：一项纵向研究。

背景技术系统性红斑狼疮（SLE）患者的一般健康相关生活质量（HRQoL）问卷的用途尚不确定。我们通过检查通用（SF36）和特定（SLEQOL）HRQoL调查与全球变化评估（GRC）和SLE临床指标的关联，比较了它们的表现。方法该研究纳入了2013年至2017年间在单中心风湿病门诊就诊的SLE患者。患者均完成了特定（SLEQOL）和一般（SF36）调查，并使用7点Likert量表对他们的GRC进行了评分例行拜访的同一天。根据GRC评分，患者HRQoL的变化分为“无变化”，“恶化”或“改善”。疾病活动（SLEDAI-2K），耀斑，每次访视时都要评估狼疮和狼疮低疾病活动状态（LLDAS），并每年确定一次器官损害（SDI）。检查了SLEQOL和SF36组件之间的成对相关性，并使用广义估计方程（GEE）比较了GRC状态和SLE疾病指标之间的相关性。结果分析中纳入了307例2062次就诊的患者。SLEQOL与SF36显着相关。患者报告所有访视的HRQoL改善了58％，恶化了15％，“没有变化”。与“无变化”组相比，恶化组的SF36和SLEQOL平均得分显着降低，而改善组的SF36和SLEQOL平均得分则更高。SLEQOL和SF36在恶化和改善组中观察到的变化幅度相似。LLDAS患者的SLEQOL和SF36均值均明显较高。相反，患有活动性疾病的患者，特别是那些具有皮肤，肾脏，中枢神经系统和肌肉骨骼活动的患者，其SLEQOL和SF36明显降低。耀斑和器官损伤也与较低的SLEQOL和SF36-PCS（物理成分）有关，而与SF36-MCS（精神成分）无关。结论SLEQOL和SF36类似地描述了SLE中的HRQoL。两种仪器均显示出与基于GRC的恶化或改善以及SLE疾病状态密切相关。LLDAS与HRQoL改善有关。SLEQOL和SF36明显降低。耀斑和器官损伤也与较低的SLEQOL和SF36-PCS（物理成分）有关，而与SF36-MCS（精神成分）无关。结论SLEQOL和SF36类似地描述了SLE中的HRQoL。两种仪器均显示出与基于GRC的恶化或改善以及SLE疾病状态密切相关。LLDAS与HRQoL改善有关。SLEQOL和SF36明显降低。耀斑和器官损伤也与较低的SLEQOL和SF36-PCS（物理成分）有关，而与SF36-MCS（精神成分）无关。结论SLEQOL和SF36类似地描述了SLE中的HRQoL。两种仪器均显示出与基于GRC的恶化或改善以及SLE疾病状态密切相关。LLDAS与改善的HRQoL相关。