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An electronic, unsupervised patient-reported Expanded Disability Status Scale for multiple sclerosis
Multiple Sclerosis Journal ( IF 4.8 ) Pub Date : 2020-11-25 , DOI: 10.1177/1352458520968814
Andrew R Romeo 1 , William M Rowles 1 , Erica S Schleimer 1 , Patrick Barba 1 , Wan-Yu Hsu 1 , Refujia Gomez 1 , Adam Santaniello 1 , Chao Zhao 1 , Jennifer R Pearce 2 , J B Jones 3 , Bruce C Cree 1 , Stephen L Hauser 1 , Jeffrey M Gelfand 1 , Walter F Stewart 4 , Douglas S Goodin 5 , Riley M Bove 5
Affiliation  

BACKGROUND In persons with multiple sclerosis (MS), the Expanded Disability Status Scale (EDSS) is the criterion standard for assessing disability, but its in-person nature constrains patient participation in research and clinical assessments. OBJECTIVE The aim of this study was to develop and validate a scalable, electronic, unsupervised patient-reported EDSS (ePR-EDSS) that would capture MS-related disability across the spectrum of severity. METHODS We enrolled 136 adult MS patients, split into a preliminary testing Cohort 1 (n = 50), and a validation Cohort 2 (n = 86), which was evenly distributed across EDSS groups. Each patient completed an ePR-EDSS either immediately before or after a MS clinician's Neurostatus EDSS evaluation. RESULTS In Cohort 2, mean age was 50.6 years (range = 26-80) and median EDSS was 3.5 (interquartile range (IQR) = [1.5, 5.5]). The ePR-EDSS and EDSS agreed within 1-point for 86% of examinations; kappa for agreement within 1-point was 0.85 (p < 0.001). The correlation coefficient between the two measures was 0.91 (<0.001). DISCUSSION The ePR-EDSS was highly correlated with EDSS, with good agreement even at lower EDSS levels. For clinical care, the ePR-EDSS could enable the longitudinal monitoring of a patient's disability. For research, it provides a valid and rapid measure across the entire spectrum of disability and permits broader participation with fewer in-person assessments.

中文翻译:

一种电子的、无人监督的、由患者报告的多发性硬化症扩展残疾状态量表

背景 在多发性硬化症 (MS) 患者中,扩展残疾状态量表 (EDSS) 是评估残疾的标准标准,但其面对面的性质限制了患者参与研究和临床评估。目的 本研究的目的是开发和验证一种可扩展的、电子的、无监督的患者报告的 EDSS (ePR-EDSS),该 EDSS 将捕获整个严重程度范围内与 MS 相关的残疾。方法 我们招募了 136 名成年 MS 患者,分为初步测试队列 1 (n = 50) 和验证队列 2 (n = 86),它们均匀分布在 EDSS 组中。每位患者在 MS 临床医生的 Neurostatus EDSS 评估之前或之后立即完成了 ePR-EDSS。结果 在队列 2 中,平均年龄为 50.6 岁(范围 = 26-80),中位 EDSS 为 3。5(四分位距 (IQR) = [1.5, 5.5])。对于 86% 的考试,ePR-EDSS 和 EDSS 在 1 分内达成一致;1 点内的一致性 kappa 为 0.85 (p < 0.001)。两项测量之间的相关系数为 0.91(<0.001)。讨论 ePR-EDSS 与 EDSS 高度相关,即使在较低的 EDSS 水平下也具有良好的一致性。对于临床护理,ePR-EDSS 可以实现对患者残疾的纵向监测。对于研究,它为整个残疾范围提供了一种有效且快速的测量方法,并允许更广泛的参与,而现场评估更少。讨论 ePR-EDSS 与 EDSS 高度相关,即使在较低的 EDSS 水平下也具有良好的一致性。对于临床护理,ePR-EDSS 可以实现对患者残疾的纵向监测。对于研究,它为整个残疾范围提供了一种有效且快速的测量方法,并允许更广泛的参与,而现场评估更少。讨论 ePR-EDSS 与 EDSS 高度相关,即使在较低的 EDSS 水平下也具有良好的一致性。对于临床护理,ePR-EDSS 可以实现对患者残疾的纵向监测。对于研究,它为整个残疾范围提供了一种有效且快速的测量方法,并允许更广泛的参与,而现场评估更少。
更新日期:2020-11-25
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