The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts
The Scleroderma Patient-Centered Intervention Network Cohort: baseline clinical features and comparison with other large scleroderma cohorts
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DOI：
10.1093/rheumatology/key139
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发表时间：
2018-09-01
期刊：
影响因子：
5.5
通讯作者：
Mayes, Maureen D.
中科院分区：
文献类型：
--
作者：
Dougherty, Dane H.;Kwakkenbos, Linda;Mayes, Maureen D.
目标。硬皮病患者中心干预网络（SPIN）队列是一个基于网络的队列，旨在定期收集患者报告的结果，作为对硬皮病患者进行社会心理、教育、自我管理和康复干预试验的框架。本研究的目的是提供SPIN队列的基线人口统计学、医学和患者报告的结果数据，并将其与其他大型SSc队列进行比较。采用描述性统计方法总结SPIN队列特征；将这些数据与欧洲硬皮病试验与研究（EUSTAR）和加拿大硬皮病研究小组（CSRG）的已发表数据进行比较。SPIN组（N= 1125）的人口统计学、器官受损伤和抗体谱数据与EUSTAR组（N= 7319）和CSRG组（N= 1390）的数据大致相当。所有队列中女性和白人患者的比例都很高，尽管相对比例有所不同。sc70抗体频率在EUSTAR组最高，在SPIN组略低，在CSRG组最低，这与SPIN组dcSSc患者中间质性肺疾病的比例高于CSRG组（48.5比40.3%）一致。RNA聚合酶III抗体频率在SPIN中最高，而在EUSTAR中明显较低（21.1 vs 2.4%），这与SPIN中SSc肾危像的较高患病率（4.5 vs 2.1%）一致。尽管存在一些差异，但SPIN队列与其他大型流行SSc队列在很大程度上具有可比性，这增加了人们的信心，即从SPIN队列获得的见解应该是可推广的，尽管应该指出的是，所有三个队列主要包括白人参与者。
Objectives. The Scleroderma Patient-centered Intervention Network (SPIN) Cohort is a web-based cohort designed to collect patient-reported outcomes at regular intervals as a framework for conducting trials of psychosocial, educational, self-management and rehabilitation interventions for patients with SSc. The aim of this study was to present baseline demographic, medical and patient-reported outcome data of the SPIN Cohort and to compare it with other large SSc cohorts.Methods. Descriptive statistics were used to summarize SPIN Cohort characteristics; these were compared with published data of the European Scleroderma Trials and Research (EUSTAR) and Canadian Scleroderma Research Group (CSRG) cohorts.Results. Demographic, organ involvement and antibody profile data for SPIN (N= 1125) were generally comparable with that of the EUSTAR (N= 7319) and CSRG (N= 1390) cohorts. There was a high proportion of women and White patients in all cohorts, though relative proportions differed. Scl70 antibody frequency was highest in EUSTAR, somewhat lower in SPIN, and lowest in CSRG, consistent with the higher proportion of interstitial lung disease among dcSSc patients in SPIN compared with in CSRG (48.5 vs 40.3%). RNA polymerase III antibody frequency was highest in SPIN and remarkably lower in EUSTAR (21.1 vs 2.4%), in line with the higher prevalence of SSc renal crisis (4.5 vs 2.1%) in SPIN.Conclusion. Although there are some differences, the SPIN Cohort is broadly comparable with other large prevalent SSc cohorts, increasing confidence that insights gained from the SPIN Cohort should be generalizable, although it should be noted that all three cohorts include primarily White participants.