Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes.

IF 1.9 4区 医学 Q1 EDUCATION, SPECIAL Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-01-01 DOI:10.1352/1944-7558-130.1.1
Breanne J Byiers, Alyssa M Merbler, Chantel C Burkitt, Frank J Symons
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Abstract

Sleep problems are common in Rett syndrome and other neurogenetic syndromes. Actigraphy is a cost-effective, objective method for measuring sleep. Current guidelines require caregiver-reported bed and wake times to facilitate actigraphy data scoring. The current study examined missingness and consistency of caregiver-reported bed and wake times from paper sleep diaries and actigraphy event mark button presses in a sample of 38 individuals with Rett and related syndromes (aged 2-36 years, mean = 13.1) across two 14-day collection time points. Rates of missingness and discrepancy between the 2 sources were relatively high and correlated with clinical severity and quality of life. Overall, the results suggest a need for alternative actigraphy scoring methods that do not rely on caregiver report in this population.

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在rett相关综合征中使用父母报告的睡觉和醒来时间进行活动描记评分的挑战。
睡眠问题在Rett综合征和其他神经遗传综合征中很常见。活动记录仪是一种成本效益高、客观的睡眠测量方法。目前的指南要求护理人员报告就寝时间和起床时间,以便于活动记录仪数据评分。目前的研究在两个14天的收集时间点对38名Rett及相关综合征患者(年龄2-36岁,平均= 13.1岁)的样本进行了检查,从纸质睡眠日记和活动记录仪事件标记按钮按下的看护人报告的睡眠和醒来时间的缺失和一致性。两种来源的缺失率和差异率相对较高,并与临床严重程度和生活质量相关。总的来说,结果表明,需要替代的活动记录仪评分方法,不依赖于护理人员报告在这一人群。
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来源期刊
CiteScore
3.10
自引率
4.80%
发文量
47
期刊介绍: The American Journal on Intellectual and Developmental Disabilities (Print ISSN: 1944–7515; Online ISSN: 1944–7558) is published by the American Association on Intellectual and Developmental Disabilities. It is a scientifi c, scholarly, and archival multidisciplinary journal for reporting original contributions of the highest quality to knowledge of intellectual disabilities, its causes, treatment, and prevention.
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