Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis
Validating a novel web-based method to capture disease progression outcomes in multiple sclerosis
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DOI：
10.1007/s00415-013-7004-1
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发表时间：
2013-10-01
影响因子：
6
通讯作者：
Dobson, Ruth
中科院分区：
文献类型：
--
作者：
Leddy, Sara;Hadavi, Shahrzad;Dobson, Ruth
扩展残疾状态量表（EDSS）是目前监测多发性硬化症（MS）疾病严重程度的“金标准”。EDSS是一种基于医生的评估。EDSS的患者相关替代物可用于远程捕获信息。作为临床试验的一部分，招募了81名患有EDSS的患者（EDSS范围0-8）。所有患者都在最低限度的帮助下进行了基于网络的调查。78例患者获得了完整的EDSS评分。使用方差分析、配对检验、Pearson系数、加权Kappa系数和组内相关系数将EDSS评分与在线调查产生的评分进行比较。基于互联网的EDSS评分与医生测量的评估显示出良好的相关性（Pearson系数= 0.85）。完全一致性的加权kappa为0.647。在EDSS评分范围为0 - 6的20例患者中观察到完全一致性;许多100%一致性的患者评分为5.5-6（n = 8）。所有病例的总体类内系数为0.844。基于互联网的FS和EDSS与医生测量的分数显示出良好的一致性。评分较高的患者的一致性更好。患者对网络评估的总体满意度很高。基于互联网的评估工具可能被证明是MS长期监测的宝贵工具。
The Expanded Disability Status Scale (EDSS) is the current 'gold standard' for monitoring disease severity in multiple sclerosis (MS). The EDSS is a physician-based assessment. A patient-related surrogate for the EDSS may be useful in remotely capturing information. Eighty-one patients (EDSS range 0-8) having EDSS as part of clinical trials were recruited. All patients carried out the web-based survey with minimal assistance. Full EDSS scores were available for 78 patients. The EDSS scores were compared to those generated by the online survey using analysis of variance, matched pair test, Pearson's coefficient, weighted kappa coefficient, and the intra-class correlation coefficient. The internet-based EDSS scores showed good correlation with the physician-measured assessment (Pearson's coefficient = 0.85). Weighted kappa for full agreement was 0.647. Full agreement was observed in 20 patients who had EDSS scores ranging from 0 to 6; many of those with 100 % agreement had scores of 5.5-6 (n = 8).The intra-class coefficient was 0.844 overall for all cases. Internet-based FS and EDSS show good agreement with physician-measured scores. Agreement was better in patients with higher scores. Overall patient satisfaction with the web-based assessment was high. An internet-based assessment tool is likely to prove an invaluable tool in the long-term monitoring in MS.