Bowen J, Gibbons L, Gianas A, Kraft G H
Department of Neurology, University of Washington, Seattle, USA.
Mult Scler. 2001 Jun;7(3):201-6. doi: 10.1177/135245850100700311.
Patient-administered measures are needed to assess disability cost-effectively in large epidemiological studies.
An outpatient clinic in a large multiple sclerosis center.
A self-administered EDSS questionnaire was developed (EDSS-S). Consecutive patients with clinically definite multiple sclerosis completed the EDSS-S (n=95). During the same visit, a physician completed an EDSS (EDSS-P). Scores below 4.0 were determined using functional system (FS) scores. Scores above 4.0 were calculated by two methods, using gait alone and using gait and functional system scores combined.
EDSS-P scores ranged from 0-9.5 (mean 5.1, median 5.0, 78% female, age 17-78, mean age 45). Mean EDSS-P, EDSS-S and intraclass correlation coefficients of agreement were: EDSS using ambulation alone (4.6, 5.1, 0.89), EDSS using ambulation and FS scores (4.6, 5.3, 0.87), bowel/bladder FS scores (1.6, 1.7, 0.79), pyramidal FS scores (2.1, 2.4, 0.67), sensory FS scores (1.6, 2.1, 0.60), cerebellar FS scores (1.1, 1.6, 0.55), brainstem FS scores (0.5, 1.2, 0.45), vision FS scores (1.9, 1.3, 0.38), cerebral FS scores (0.6, 2.3, 0.27).
Very good correlation was seen between patient and physician scores for EDSS and the bowel/bladder FS score. Four other FS scores correlated moderately. In general, patients scored themselves more disabled than physicians.
在大型流行病学研究中,需要患者自行管理的测量方法来经济有效地评估残疾情况。
一家大型多发性硬化症中心的门诊诊所。
开发了一份患者自行填写的扩展残疾状态量表问卷(EDSS-S)。连续的临床确诊多发性硬化症患者完成了EDSS-S(n = 95)。在同一次就诊期间,医生完成了扩展残疾状态量表(EDSS-P)。4.0分以下的分数通过功能系统(FS)分数确定。4.0分以上的分数通过两种方法计算,一种仅使用步态,另一种使用步态和功能系统分数相结合。
EDSS-P分数范围为0 - 9.5(平均5.1,中位数5.0,78%为女性,年龄17 - 78岁,平均年龄45岁)。EDSS-P、EDSS-S的平均分数以及组内相关系数一致性为:仅使用步行的EDSS(4.6,5.1,0.89),使用步行和FS分数的EDSS(4.6,5.3,0.87),肠道/膀胱FS分数(1.6,1.7,0.79),锥体FS分数(2.1,2.4,0.67),感觉FS分数(1.6,2.1,0.60),小脑FS分数(1.1,1.6,0.55),脑干FS分数(0.5,1.2,0.45),视觉FS分数(1.9,1.3,0.38),大脑FS分数(0.6,2.3,0.27)。
患者和医生对扩展残疾状态量表及肠道/膀胱FS分数的评分之间存在非常好的相关性。其他四个FS分数相关性中等。总体而言,患者给自己评定的残疾程度比医生评定的更高。