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1、,干燥综合征的疾病评价,SS以淋巴细胞增殖和进行性外分泌腺体损伤为特性的系统性疾病临床特点：温和但可能影响功能的症状：干燥症状、疼痛、疲乏，见于大多患者潜在系统性表现：见于20-40%的患者核心指标：症状（sicca特点、疲乏、健康相关的生活质量）系统损害的活动性（复合的活动指标和实验室检测）,现有pSS疾病评价标准分类：,1疾病活动度评分（SSDAI、SCAI、ESSDAI）2患者主观评分(PROFAD、SICCA、ESSPRI)3疾病损伤评分（SSDDI、SSDI）,ESSPRI的产生EULAR Sjogrens Syndrome Patient Reported Index,2008.1
2、2.42009.11.30入组230名SS患者，来自欧洲、南北美洲12个国家21名SS专家参与EULAR的国际合作项目2011年2月研究结果online版首发发表于ARDEULAR Sjogrens Syndrome Patient Reported Index(ESSPRI):development of a consensus patient index for primary Sjogrens syndrome.Ann Rheum Dis.2011 Jun;70(6):968-72.Epub 2011 Feb 22.,ESSPRI的实验设计内容,4个主要症状：干燥症状、疼痛、躯体疲劳、精
3、神疲倦。每项分值范围010分患者认为最需要改善的一项症状疲劳与不适问卷(PROFAD)Sicca症状调查表(SSI)金标准：患者整体评价（PGA）010分EULAR Sjogrens Syndrome Patient Reported Index(ESSPRI):development of a consensus patient index for primary Sjogrens syndrome.Ann Rheum Dis.2011 Jun;70(6):968-72.Epub 2011 Feb 22.,ESSPRI的实验结果,1.多变量回归分析证明，干燥症状、肢体痛、疲劳与PGA符合度好
4、，但是精神疲倦与PGA符合度较差。2.患者认为最需要改善的症状：干燥症状（38.7%）、疲劳（32.2%）、肢体痛（19.6%），最不重要的为精神疲倦,3.在干燥症状中，口干、眼干被认为最重要4.ESSPRI最终评分为干燥症状、疲乏、肢体痛三个积分的平均值，范围为010分,EULAR Sjogrens syndrome disease activity index:development of a consensus systemic disease activity index for primary Sjogrens syndrome.Ann Rheum Dis.2010 Jun;69(6
5、):1103-9.Epub 2009 Jun 28.Erratum in:Ann Rheum Dis.2011 May;70(5):880.,ESSPRI的特性,1.完全由患者主观填表所得，与ESSDAI良好互补2.与PGA、PROFAD、SSI符合度好（r=0.70、0.73、0.66)，用以评价患者症状的准确性较高。3.大样本、多中心4.简单易行，适用于临床EULAR Sjogrens Syndrome Patient Reported Index(ESSPRI):development of a consensus patient index for primary Sjogrens s
6、yndrome.Ann Rheum Dis.2011 Jun;70(6):968-72.Epub 2011 Feb 22.,PROFAD评分,Measurement of fatigue and discomfort in primary Sjogrens syndrome using a new questionnaire tool.Rheumatology(Oxford).2004 Jun;43(6):758-64.Epub 2004 Mar 23.,SSI评分(sicca symptoms inventory),Validation of the Sicca Symptoms Inven
7、tory for clinical studies of Sjgrens syndrome.Bowman SJ,Booth DA,Platts RG,Field A,Rostron J;UK Sjgrens Interest Group.J Rheumatol.2003 Jun;30(6):1259-66.,EULAR的疾病活动度评分标准ESSDAI,EULAR Sjogrens syndrome disease activity index,ESSDAI评分标准,（权重3）,（4）,（2）,(2),(3),(5),(5),(6),(5),(5),(2),(1),欧洲风湿病联盟提出新的干燥综合
8、征疾病活动指数丁艳 何菁 北京大学人民医院风湿免疫科 中华风湿病杂志 2010第八期,接上表,ESSDAI与ESSPRI二者互补，将二者联用作为临床实验和临床工作的评价工具,EULAR Sjogrens Syndrome Patient Reported Index(ESSPRI):development of a consensus patient index for primary Sjogrens syndrome.Ann Rheum Dis.2011 Jun;70(6):968-72.Epub 2011 Feb 22.,EULAR Sjogrens syndrome disease a
9、ctivity index:development of a consensus systemic disease activity index for primary Sjogrens syndrome.Ann Rheum Dis.2010 Jun;69(6):1103-9.Epub 2009 Jun 28.Erratum in:Ann Rheum Dis.2011 May;70(5):880.,其它目前使用的疾病活动度评分SSDAI评分,Sjgrens Syndrome Disease Damage Index and disease activity index:scoring syst
10、ems for the assessment of disease damage and disease activity in Sjgrens syndrome,derived from an analysis of a cohort of Italian patients.Vitali C et al.Arthritis Rheum.(2007),SCAI评分Sjgrens Systemic Clinical Activity Index,Sjgrens Systemic Clinical Activity Index(SCAI)-a systemic disease activity m
11、easure for use in clinical trials in primary Sjgrens syndrome.Rheumatology(Oxford).2007 Dec;46(12):1845-51.,干燥综合征疾病损伤评分（SSDDI）,Sjgrens Syndrome Disease Damage Index and disease activity index:scoring systems for the assessment of disease damage and disease activity in Sjgrens syndrome,derived from an analysis of a cohort of Italian patients.Vitali C et al.Arthritis Rheum.(2007),干燥综合征损伤评分SSDI,The Sjgrens Syndrome Damage Index-a damage index for use in clinical trials and observational studies in primary Sjgrens syndrome.Barry RJ et al.Rheumatology(Oxford).(2008),谢谢,
