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2018 年全球照顾发作性睡病患者的医护人员调查:WSS 发作性睡病工作组。

2018 worldwide survey of health-care providers caring for patients with narcolepsy: WSS narcolepsy task force.

机构信息

Sleep Medicine Associates of Texas, Dallas, TX, USA.

Department of Neurology, Albert Einstein College of Medicine, Bronx, New York, NY, USA.

出版信息

Sleep Med. 2021 Jun;82:23-28. doi: 10.1016/j.sleep.2021.03.014. Epub 2021 Mar 15.

DOI:10.1016/j.sleep.2021.03.014
PMID:33873103
Abstract

BACKGROUND

There are limited data available on regional differences in the diagnosis and management of narcolepsy. In order to better understand worldwide trends in clinical assessment and management of narcolepsy, a survey of health-care providers was conducted by the World Sleep Society Narcolepsy task force.

METHODS

A total of 146 surveys that included items on the diagnosis and management of narcolepsy were completed by practitioners representing 37 countries.

RESULTS

Most of the participants were from Europe, North America, Oceania, Asia and Latin America. A consistent approach to applying the diagnostic criteria of Narcolepsy was documented with the exception of measurement of CSF hypocretin-1, which has limited availability. While the majority of practitioners (58%) reported not using the test, 1% indicated always evaluating CSF hypocretin-1 levels. There was much variability in the availability of currently recommended medications such as sodium oxybate and pitolisant; modafinil and antidepressants were the most commonly used medications. Amphetamines were unavailable in some countries.

CONCLUSION

The results of the study highlight clinical and therapeutic realities confronted by worldwide physicians in the management of narcolepsy. While the diagnostic criteria of narcolepsy rely in part on the quantification of CSF hypocretin-1, few physicians reported having incorporated this test into their routine assessment of the condition. Regional differences in the management of narcolepsy appeared to be related to geographic availability and expense of the therapeutic agents.

摘要

背景

关于嗜睡症的诊断和治疗方面的区域性差异,目前数据有限。为了更好地了解全球嗜睡症临床评估和管理方面的趋势,世界睡眠协会嗜睡症工作组对医疗保健提供者进行了调查。

方法

共有 146 份调查问卷完成了调查,这些调查问卷的项目包括嗜睡症的诊断和管理,由来自 37 个国家的从业者代表完成。

结果

大多数参与者来自欧洲、北美、大洋洲、亚洲和拉丁美洲。尽管脑脊液中食欲素-1 的测量结果存在差异(该检测结果的可用性有限),但记录表明大多数参与者(58%)都遵循了嗜睡症诊断标准的应用方法。虽然大多数从业者(58%)表示不使用该检测,但 1%的从业者表示始终评估脑脊液食欲素-1 水平。目前推荐的药物(如羟丁酸钠和吡咯烷酮)的可获得性存在很大差异;莫达非尼和抗抑郁药是最常用的药物。一些国家没有安非他命。

结论

该研究结果突出了全球医生在管理嗜睡症方面面临的临床和治疗现实。虽然嗜睡症的诊断标准部分依赖于脑脊液食欲素-1 的定量,但很少有医生报告将该测试纳入他们对该疾病的常规评估中。嗜睡症管理方面的区域性差异似乎与治疗药物的地理可用性和费用有关。

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