新冠疫情对发作性睡病患者的影响。
The effects of the COVID-19 pandemic on patients with narcolepsy.
机构信息
Department of Psychobiology, Universidade Federal de São Paulo, São Paulo, Brazil.
Department of Neurology and Neurosurgery, Universidade Federal de São Paulo, São Paulo, Brazil.
出版信息
J Clin Sleep Med. 2021 Apr 1;17(4):621-627. doi: 10.5664/jcsm.8952.
STUDY OBJECTIVES
To the best of our knowledge, there has not as yet been any study on the effects of the COVID-19 pandemic on patients with narcolepsy, in particular, in relation to its impact on sleep schedules, symptoms, the need for medication, work, income, and quality of life. This study therefore aimed to explore these factors and their possible influence on sleep, circadian timing, and narcolepsy symptoms during the pandemic.
METHODS
Patients with narcolepsy who had been in quarantine for at least 3 months completed a 36-question online survey. Questions targeted the conditions of the quarantine, sleep-related behaviors, and factors known to affect sleep and circadian rhythms (work status, income, appetite, narcolepsy symptoms, and medication), as well as the quality of life during the quarantine period.
RESULTS
The routines of the participants had been altered by quarantine, with changes in their place of work, and an increase in narcolepsy symptoms, such as cataplexy, sleep paralysis, hallucinations, nocturnal awakenings, and sleepiness. Sleep and wake times changed, resulting in altered sleep patterns in most of the sample. No association between changes in the place of work and narcolepsy symptoms was found. Regarding medication, the participants used fewer antidepressant pills but took more stimulants. Appetite was increased and self-reported quality of life decreased during the period.
CONCLUSIONS
During the quarantine, the patients with narcolepsy reported changes in their bedtime and waking-up schedules, suggesting a tendency to circadian misalignment. In Brazil, the effects of the COVID-19 outbreak have gone beyond the direct action of the virus because of the collateral damage it has caused in respect to unemployment, financial hardship, and a reduction in quality of life. These impacts have been amplified in Brazil because of the level of social inequality found in the country, and they have particularly affected vulnerable patients with rare diseases, such as the narcolepsy population.
研究目的
据我们所知，目前尚无任何研究探讨 COVID-19 大流行对发作性睡病患者的影响，特别是其对睡眠时间表、症状、药物需求、工作、收入和生活质量的影响。因此，本研究旨在探讨这些因素及其对大流行期间睡眠、昼夜节律和发作性睡病症状的可能影响。
方法
至少被隔离 3 个月的发作性睡病患者完成了一项 36 个问题的在线调查。问题针对隔离条件、与睡眠相关的行为以及已知影响睡眠和昼夜节律的因素（工作状态、收入、食欲、发作性睡病症状和药物），以及隔离期间的生活质量。
结果
隔离改变了参与者的日常生活习惯，包括工作地点的改变，以及发作性睡病症状的增加，如猝倒、睡眠瘫痪、幻觉、夜间觉醒和嗜睡。睡眠和醒来时间发生了变化，导致大多数样本的睡眠模式发生了改变。没有发现工作地点的变化与发作性睡病症状之间存在关联。关于药物，参与者使用的抗抑郁药减少，但使用的兴奋剂增多。食欲增加，自我报告的生活质量下降。
结论
在隔离期间，发作性睡病患者报告说他们的就寝时间和醒来时间发生了变化，这表明昼夜节律出现了紊乱。在巴西，COVID-19 爆发的影响超出了病毒的直接作用，因为它造成了失业、经济困难和生活质量下降等间接影响。由于巴西社会不平等程度较高，这些影响在巴西更为严重，尤其是对患有罕见病（如发作性睡病）的脆弱患者产生了影响。
Zotero 插件