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德拉维特综合征患者的睡眠问题:一项家长主导的调查。

Sleep in Dravet syndrome: A parent-driven survey.

机构信息

Division of Neurology, Epilepsy Center, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, United States.

Dept. Psychiatry, Northwestern University Feinberg School of Medicine, Chicago, IL, United States.

出版信息

Seizure. 2021 Feb;85:102-110. doi: 10.1016/j.seizure.2020.12.021. Epub 2021 Jan 7.

DOI:10.1016/j.seizure.2020.12.021
PMID:33453590
Abstract

OBJECTIVES

To describe and quantify the nature and severity of sleep disruptions in young people with Dravet syndrome (DS) based upon parent report.

METHODS

Qualitative review of available pediatric sleep instruments with parent members of the Dravet syndrome Foundation led to the design of a series of questions customized to DS and other severe epilepsies. The questionnaire was administered as part of an on-line survey that reflected specific sleep-related concerns of parents of children with severe epilepsy.

RESULTS

76 parent-respondents completed the survey for their children-participants. Children's median age was 7.5 years (IQR 4.7-15.3); 41 (54 %) were female. The majority of parents (70/76, 93 %) used some method to monitor children while sleeping; co-sleeping was the most common method (45/76, 59 %). Seizures disrupted sleep in 40/76 (53 %); 19(48 %) reported nocturnal seizures 3 or more nights per week. In addition, 58/76 (76 %) also reported non-seizure-related nocturnal awakenings with 30 reporting awakenings 3 or more nights affected per week.

SIGNIFICANCE

Young people with Dravet syndrome have frequently disrupted sleep secondary to seizures and other factors. Co-sleeping practices, medication effects, enuresis during seizures and other factors are not considered on standard sleep questionnaires. Current findings highlight the frequency of epilepsy-specific concerns and lay groundwork for sleep measures more appropriate for this population.

摘要

目的

根据家长报告,描述并量化患有德拉维特综合征(DS)的年轻人的睡眠障碍的性质和严重程度。

方法

对现有的儿科睡眠仪器进行定性回顾,这些仪器的家长成员是德拉维特综合征基金会的成员,这导致了一系列专门针对 DS 和其他严重癫痫的问题的设计。该问卷作为在线调查的一部分进行,该调查反映了患有严重癫痫的儿童家长的具体睡眠相关问题。

结果

76 名家长为其子女参与者完成了调查。儿童的中位年龄为 7.5 岁(IQR 4.7-15.3);41 名(54%)为女性。大多数家长(70/76,93%)使用某种方法来监测孩子的睡眠;同睡是最常见的方法(45/76,59%)。40/76(53%)的患儿癫痫发作会扰乱睡眠;19 名(48%)报告每周夜间发作 3 次或以上。此外,58/76(76%)还报告了非癫痫相关的夜间觉醒,其中 30 名报告每周有 3 次或以上的觉醒受影响。

意义

患有德拉维特综合征的年轻人由于癫痫发作和其他因素经常睡眠中断。同睡、药物作用、癫痫发作期间遗尿和其他因素在标准睡眠问卷中并未考虑在内。目前的发现强调了癫痫特有的问题的频率,并为更适合该人群的睡眠措施奠定了基础。

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