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1、,干燥综合征的疾病评价 北京积水潭医院-伍沪生,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), EULAR Sjogrens Syndrome Patient Repor
2、ted Index,2008.12.42009.11.30 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ARD 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的实验设计
3、内容,4个主要症状:干燥症状、疼痛、躯体疲劳、精神疲倦。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
4、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,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, 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 Rh
5、eum Dis. 2010 Jun;69(6):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 pati
6、ent index for primary Sjogrens syndrome. 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
7、),Validation of the Sicca Symptoms Inventory 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, 丁艳 何菁 北京大学人民医院风湿免疫科 中华风湿病杂
8、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 activity index: development of
9、 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 systems for the assessme
10、nt 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 measure for use
11、 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,
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