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多发性硬化症概况:纽约州多发性硬化症联盟

A profile of multiple sclerosis: the New York State Multiple Sclerosis Consortium.

作者信息

Jacobs L D, Wende K E, Brownscheidle C M, Apatoff B, Coyle P K, Goodman A, Gottesman M H, Granger C V, Greenberg S J, Herbert J, Krupp L, Lava N S, Mihai C, Miller A E, Perel A, Smith C R, Snyder D H

机构信息

Department of Neurology, The Buffalo General Hospital, Buffalo, NY 14203, USA.

出版信息

Mult Scler. 1999 Oct;5(5):369-76. doi: 10.1177/135245859900500511.

Abstract

We have obtained a current profile of multiple sclerosis York State through a centralized patient registry and standardized data collection instrument associated with the New York State Multiple Sclerosis Consortium of 12 MS centers located throughout the state. Data from the first 3019 patients with clinically definite MS revealed a clear relationship between MS disease type, duration of disease, and severity of physical disability. Patients with relapsing disease had disease durations approximately half as long as those with progressive forms of the disease (means approximately 6 years versus 11 years). The majority of patients with relapsing disease had Expanded Disability Status Scale (EDSS) scores of 4.0 or less (self-sustained, fully ambulatory), whereas the majority of patients with progressive disease types had EDSS scores of 6.0 or greater (at least unilateral assist for walking). These findings emphasize the importance of early intervention in patients with relapsing disease to slow or prevent the accumulation of physical disability associated with progressive types of disease. Progressive disease was associated with lack of full-time employment and being disabled before the age of 60 years. Patients with relapsing disease were more likely to be employed and have private forms of insurance, whereas patients with progressive types of disease were more likely to have government-supported insurance to cover medical expenses.

摘要

我们通过一个集中式患者登记系统和与纽约州多发性硬化症联盟相关的标准化数据收集工具,获取了纽约州多发性硬化症的当前概况。该联盟由遍布全州的12个多发性硬化症中心组成。来自首批3019例临床确诊为多发性硬化症患者的数据显示,多发性硬化症的疾病类型、病程和身体残疾严重程度之间存在明显关联。复发型疾病患者的病程约为进展型疾病患者的一半(平均约6年对11年)。大多数复发型疾病患者的扩展残疾状态量表(EDSS)得分在4.0或以下(能够自主行走,完全可独立活动),而大多数进展型疾病患者的EDSS得分在6.0或以上(行走至少需要单侧辅助)。这些发现强调了对复发型疾病患者进行早期干预以减缓或预防与进展型疾病相关的身体残疾累积的重要性。进展型疾病与未全职工作以及60岁之前残疾有关。复发型疾病患者更有可能就业并拥有私人保险形式,而进展型疾病患者更有可能拥有政府支持的保险来支付医疗费用。

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