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发作性睡病的生活影响:与地理来源(北美、亚洲或欧洲)以及其他患者和疾病变量的关系。

Life effects of narcolepsy: relationships to geographic origin (North American, Asian or European) and to other patient and illness variables.

作者信息

Broughton R, Ghanem Q, Hishikawa Y, Sugita Y, Nevsimalova S, Roth B

出版信息

Can J Neurol Sci. 1983 May;10(2):100-4. doi: 10.1017/s0317167100044723.

Abstract

A recent questionnaire survey of the life-effects of narcolepsy in 180 patients, 60 each from North American, Asian and European populations, compared to similarly distributed age and sex matched controls, documented multiple and marked effects on work, education, driving, accidents, recreation, personality, memory and other parameters. The data have now been further analysed according to the patients' geographic (culturo-genetic) origin and to a number of other patient and illness variables. The three different geographic populations showed few significant differences for the some 160 life-effects items in the questionnaire. This strongly indicates that these are an integral part of the disease or of the human reactions to it. Most of the few significant population differences appeared cultural in origin (e.g., concerning driving records, personality changes), although a few may possibly reflect genetic differences (e.g., visual problems). Analysis of the pooled data according to respondees' age, sex, age at illness onset, duration of illness and treatment led again to relatively few significant findings. It is concluded that, in general, once the disease has been diagnosed, all the major life effects are present and remain so. The results strongly support the contention that most life-effects are not related to the diagnostic 'tetrad' symptoms themselves but rather to excessive daytime sleepiness, the symptoms most resistant to ant-narcoleptic treatment.

摘要

最近对180名发作性睡病患者的生活影响进行了问卷调查,其中北美、亚洲和欧洲人群各60名,并与年龄和性别分布相似的匹配对照组进行比较,结果表明发作性睡病对工作、教育、驾驶、事故、娱乐、性格、记忆及其他方面产生了多重显著影响。现在已根据患者的地理(文化 - 遗传)起源以及其他一些患者和疾病变量对数据进行了进一步分析。对于问卷中约160项生活影响项目,这三个不同地理人群之间几乎没有显著差异。这有力地表明这些影响是该疾病或人类对其反应的一个组成部分。少数显著的人群差异大多源于文化方面(例如,关于驾驶记录、性格变化),尽管少数可能反映了基因差异(例如,视觉问题)。根据受访者的年龄、性别、发病年龄、病程和治疗情况对汇总数据进行分析,再次得出相对较少的显著结果。得出的结论是,一般来说,一旦疾病被诊断出来,所有主要的生活影响就已存在且持续存在。结果有力地支持了这样的观点,即大多数生活影响并非与诊断性“四联症”症状本身相关,而是与白天过度嗜睡有关,白天过度嗜睡是最难用抗发作性睡病治疗的症状。

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