Cheng E M, Hays R D, Myers L W, Ellison G W, Beckstrand M, Vickrey B G
Department of Neurology, UCLA, Los Angeles, California 90095-1769, USA.
Mult Scler. 2001 Dec;7(6):405-10. doi: 10.1177/135245850100700610.
Although the Expanded Disability Status Scale (EDSS) remains a widely used scale for evaluating impairments in people with multiple sclerosis (MS), EDSS assessments are infeasible in certain situations. A self-administered version of the EDSS would be potentially useful if it yielded similar results as the conventional physician-based version.
We developed a self-administered patient questionnaire to obtain ratings of neurologic impairments, and developed algorithms to estimate EDSS scores. We mailed the questionnaires to all new consecutive patients scheduled to be seen at an MS clinic. Questionnaires were completed prior to the visit and traditional EDSS ratings were made by one of two neurologists at the visit. One hundred and forty-six pairs of patient questionnaires and physician EDSS assessments were obtained.
Kappa values for agreement between the physician's EDSS scores and the questionnaire-derived scores were 0.13 (for exact agreement), 0.39 (+/-0.5 EDSS steps), and 0.56 (+/-1.0 EDSS steps). A scatterplot showed that agreement was best at EDSS scores <3.0 and >5.0. Better agreement was obtained when patients had a higher level of education, and when the physician was more certain of the diagnosis of MS.
While the self-assessed EDSS scores do not agree highly enough to take the place of conventional EDSS scores, they may be sufficient for MS trial screening or for assessing outcomes across broad categories of disability.
尽管扩展残疾状态量表（EDSS）仍然是评估多发性硬化症（MS）患者损伤情况的广泛使用的量表，但在某些情况下，EDSS评估是不可行的。如果自行填写版本的EDSS能产生与传统的基于医生评估版本相似的结果，那么它可能会很有用。
我们开发了一份患者自行填写的问卷以获取神经损伤评分，并开发了算法来估计EDSS分数。我们将问卷邮寄给所有计划在MS诊所就诊的新连续患者。问卷在就诊前完成，传统的EDSS评分由两名神经科医生中的一位在就诊时进行。共获得了146对患者问卷和医生的EDSS评估结果。
医生的EDSS分数与问卷得出的分数之间的一致性kappa值分别为0.13（完全一致）、0.39（±0.5个EDSS等级）和0.56（±1.0个EDSS等级）。散点图显示，在EDSS分数<3.0和>5.0时一致性最佳。当患者受教育程度较高以及医生对MS诊断更确定时，一致性更好。
虽然自我评估的EDSS分数与传统EDSS分数的一致性不足以取代传统分数，但它们可能足以用于MS试验筛查或评估广泛残疾类别的结果。
