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Abstract：
OBJECTIVE: To account for heterogeneity in systemic lupus erythematosus (SLE) and bridge discrepancies between patient- and physician-perceived SLE activity, we developed the Type 1 and 2 SLE model. We examined PROMIS-29 scores, a composite patient-reported outcome (PRO) measure, through the lens of the model.
METHODS: Patients completed PROMIS-29 and the polysymptomatic distress scale (PSD). Rheumatologists completed the SLE disease activity index (SLEDAI), and physician\'s global assessments (PGAs) for Type 1 and 2 SLE. We defined Type 1 SLE using SLEDAI, Type 1 PGA, and active nephritis, and Type 2 SLE using PSD and Type 2 PGA. We compared PROMIS-29 T-scores among Type 1 and 2 SLE groups and explored whether PROMIS-29 can predict Type 1 and 2 SLE activity.
RESULTS: Compared to the general population, patients with isolated Type 1 SLE reported greater pain and physical dysfunction but less depression and improved social functions; patients with high Type 2 SLE (irrespective of Type 1 activity) reported high levels of pain, fatigue, and social and physical limitations. Patients with minimal Type 1 and 2 SLE had less depression and greater physical functioning with other domains similar to national norms. PROMIS-29 predicted Type 2 but not Type 1 SLE activity.
CONCLUSIONS: PROMIS-29 similarities in patients with high Type 2 SLE, with and without active Type 1 SLE, demonstrate the challenges of using PROs to assess SLE inflammation. In conjunction with the Type 1 and 2 SLE model, however, PROMIS-29 identified distinct symptom patterns, suggesting that the model may help clinicians interpret PROs.
METHODS: Patients completed PROMIS-29 and the polysymptomatic distress scale (PSD). Rheumatologists completed the SLE disease activity index (SLEDAI), and physician\'s global assessments (PGAs) for Type 1 and 2 SLE. We defined Type 1 SLE using SLEDAI, Type 1 PGA, and active nephritis, and Type 2 SLE using PSD and Type 2 PGA. We compared PROMIS-29 T-scores among Type 1 and 2 SLE groups and explored whether PROMIS-29 can predict Type 1 and 2 SLE activity.
RESULTS: Compared to the general population, patients with isolated Type 1 SLE reported greater pain and physical dysfunction but less depression and improved social functions; patients with high Type 2 SLE (irrespective of Type 1 activity) reported high levels of pain, fatigue, and social and physical limitations. Patients with minimal Type 1 and 2 SLE had less depression and greater physical functioning with other domains similar to national norms. PROMIS-29 predicted Type 2 but not Type 1 SLE activity.
CONCLUSIONS: PROMIS-29 similarities in patients with high Type 2 SLE, with and without active Type 1 SLE, demonstrate the challenges of using PROs to assess SLE inflammation. In conjunction with the Type 1 and 2 SLE model, however, PROMIS-29 identified distinct symptom patterns, suggesting that the model may help clinicians interpret PROs.
摘要：
目的：为了解释系统性红斑狼疮（SLE）的异质性以及患者和医生感知的SLE活动之间的桥梁差异，我们开发了1型和2型SLE模型。我们检查了PROMIS-29的分数，复合患者报告结果(PRO)测量，通过模型的镜头。
方法：患者完成了PROMIS-29和多症状性痛苦量表（PSD）。风湿病学家完成了SLE疾病活动指数（SLEDAI），和医生对1型和2型SLE的全球评估(PGAs)。我们使用SLEDAI定义了类型1SLE，1型PGA,活动性肾炎,和2型SLE使用PSD和2型PGA。我们比较了1型和2型SLE组的PROMIS-29T评分，并探讨了PROMIS-29是否可以预测1型和2型SLE活动。
结果：与普通人群相比，孤立的1型SLE患者报告疼痛和身体功能障碍更大，但抑郁和社会功能改善较少；高2型SLE患者（不考虑1型活动）报告疼痛水平很高，疲劳,社会和身体限制。轻度1型和2型SLE患者的抑郁较少，其他领域与国家规范相似，身体功能更强。PROMIS-29预测2型，但不是1型SLE活动。
结论：高度2型SLE患者的PROMIS-29相似性，有和没有活动的1型SLE，展示使用PRO评估SLE炎症的挑战。结合1型和2型SLE模型，然而,PROMIS-29确定了不同的症状模式，这表明该模型可以帮助临床医生解释PRO。
方法：患者完成了PROMIS-29和多症状性痛苦量表（PSD）。风湿病学家完成了SLE疾病活动指数（SLEDAI），和医生对1型和2型SLE的全球评估(PGAs)。我们使用SLEDAI定义了类型1SLE，1型PGA,活动性肾炎,和2型SLE使用PSD和2型PGA。我们比较了1型和2型SLE组的PROMIS-29T评分，并探讨了PROMIS-29是否可以预测1型和2型SLE活动。
结果：与普通人群相比，孤立的1型SLE患者报告疼痛和身体功能障碍更大，但抑郁和社会功能改善较少；高2型SLE患者（不考虑1型活动）报告疼痛水平很高，疲劳,社会和身体限制。轻度1型和2型SLE患者的抑郁较少，其他领域与国家规范相似，身体功能更强。PROMIS-29预测2型，但不是1型SLE活动。
结论：高度2型SLE患者的PROMIS-29相似性，有和没有活动的1型SLE，展示使用PRO评估SLE炎症的挑战。结合1型和2型SLE模型，然而,PROMIS-29确定了不同的症状模式，这表明该模型可以帮助临床医生解释PRO。
