EULAR发布简单实用的原发性干燥综合征症状评分体系
发表者：张颖健
日期：2015-03-09
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摘要：目的：建立一个评估原发干燥综合征患者症状的评分体系，即欧洲抗风湿联盟干燥综合征患者报告指数（EULAR SS Patient Reported Index，ESSPRI）
方法：在制作疲劳和不适概况（PROFAD）及干燥综合征症状量表（SSI）的研究中，把干燥、疼痛、身体疲惫和精神疲劳作为原发干燥综合征患者最主要的症状。从这四个方面对患者的症状分别行简单的评分（0-10分），再相加就形成了ESSPRI。来自12个国家共230例患者填写了ESSPRI、SSI和PROFAD调查问卷表并进行患者总体状况评估（PGA，0-10分），从中获得各症状与PGA间的相关性，并以PGA为金标准，建立多重回归模型对症状进行筛选并评估其权重。
结果：PGA与干燥、肢体痛、身体疲惫和精神疲劳有良好的相关性（r=0.49~0.59，P均<0.0001），但与患者的干燥表现相关性不强。在多变量分析中，除精神疲劳外，干燥、肢体痛和身体疲惫均与PGA显著相关，且这三方面的权重完全相同。因此，ESSPRI被重新定义为干燥、肢体痛和身体疲惫这三方面的平均值，且与PGA (r=0.70)、PROFAD(r=0.73)和SSI(r=0.66)显著相关。
结论：ESSPRI是一个用来衡量原发干燥综合征患者症状的简单指数，实用有效，并与SSI和PROFAD有较高相关性，可用于临床实验的评估。
附原文：Objectives To develop a score for assessment of patients’ symptoms in primary Sjögren’s syndrome (SS): the EULAR SS Patient Reported Index (ESSPRI). Methods Dryness, pain, somatic and mental fatigue were identified as the main symptoms of patients with primary SS, in studies developing the Profile of Fatigue and Discomfort (PROFAD) and Sicca Symptoms Inventory (SSI). It was suspected that a single 0–10 numerical scale for each domain was sufficient to assess these symptoms. These four scales were gathered to form. the ESSPRI. 230 patients, from 12 countries completed the ESSPRI, SSI and PROFAD questionnaires and a 0–10 patient global assessment (PGA). Correlations between each symptom and PGA were obtained. Multiple regression modelling, using PGA as ‘gold standard’ was used to select domains and estimate their weights. Results PGA had good correlation with dryness, limb pain, fatigue and mental fatigue (r=0.49–0.59, all p<0.0001), but correlated less well with individual dryness features. In multivariate analysis, dryness, limb pain and fatigue, but not mental fatigue, were significantly associated with PGA; weights derived from the regression were identical for these three domains. Thus, ESSPRI was redefined as the mean of the three scales: dryness, limb pain and fatigue. Lastly, ESSPRI significantly correlated with PGA (r=0.70), PROFAD (r=0.73) and SSI (r=0.66). Conclusion ESSPRI is a very simple index designed to measure patients’ symptoms in primary SS. It has good construct validity and is well correlated with SSI and PROFAD. ESSPRI should now be validated for use as an outcome measure in clinical trials.
引自：EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjögren’s syndrome ABSTRACT. ARD Online First, published on February 22, 2011 as 10.1136/ard.2010.143743 （注：干燥综合症病人或亲属可加QQ群交流，群号： 118194945 ，本网站站长私人微信号： ssgzz88 ）
方法：在制作疲劳和不适概况（PROFAD）及干燥综合征症状量表（SSI）的研究中，把干燥、疼痛、身体疲惫和精神疲劳作为原发干燥综合征患者最主要的症状。从这四个方面对患者的症状分别行简单的评分（0-10分），再相加就形成了ESSPRI。来自12个国家共230例患者填写了ESSPRI、SSI和PROFAD调查问卷表并进行患者总体状况评估（PGA，0-10分），从中获得各症状与PGA间的相关性，并以PGA为金标准，建立多重回归模型对症状进行筛选并评估其权重。
结果：PGA与干燥、肢体痛、身体疲惫和精神疲劳有良好的相关性（r=0.49~0.59，P均<0.0001），但与患者的干燥表现相关性不强。在多变量分析中，除精神疲劳外，干燥、肢体痛和身体疲惫均与PGA显著相关，且这三方面的权重完全相同。因此，ESSPRI被重新定义为干燥、肢体痛和身体疲惫这三方面的平均值，且与PGA (r=0.70)、PROFAD(r=0.73)和SSI(r=0.66)显著相关。
结论：ESSPRI是一个用来衡量原发干燥综合征患者症状的简单指数，实用有效，并与SSI和PROFAD有较高相关性，可用于临床实验的评估。
附原文：Objectives To develop a score for assessment of patients’ symptoms in primary Sjögren’s syndrome (SS): the EULAR SS Patient Reported Index (ESSPRI). Methods Dryness, pain, somatic and mental fatigue were identified as the main symptoms of patients with primary SS, in studies developing the Profile of Fatigue and Discomfort (PROFAD) and Sicca Symptoms Inventory (SSI). It was suspected that a single 0–10 numerical scale for each domain was sufficient to assess these symptoms. These four scales were gathered to form. the ESSPRI. 230 patients, from 12 countries completed the ESSPRI, SSI and PROFAD questionnaires and a 0–10 patient global assessment (PGA). Correlations between each symptom and PGA were obtained. Multiple regression modelling, using PGA as ‘gold standard’ was used to select domains and estimate their weights. Results PGA had good correlation with dryness, limb pain, fatigue and mental fatigue (r=0.49–0.59, all p<0.0001), but correlated less well with individual dryness features. In multivariate analysis, dryness, limb pain and fatigue, but not mental fatigue, were significantly associated with PGA; weights derived from the regression were identical for these three domains. Thus, ESSPRI was redefined as the mean of the three scales: dryness, limb pain and fatigue. Lastly, ESSPRI significantly correlated with PGA (r=0.70), PROFAD (r=0.73) and SSI (r=0.66). Conclusion ESSPRI is a very simple index designed to measure patients’ symptoms in primary SS. It has good construct validity and is well correlated with SSI and PROFAD. ESSPRI should now be validated for use as an outcome measure in clinical trials.
引自：EULAR Sjögren’s Syndrome Patient Reported Index (ESSPRI): development of a consensus patient index for primary Sjögren’s syndrome ABSTRACT. ARD Online First, published on February 22, 2011 as 10.1136/ard.2010.143743 （注：干燥综合症病人或亲属可加QQ群交流，群号： 118194945 ，本网站站长私人微信号： ssgzz88 ）