Byiers Breanne J, Merbler Alyssa M, Burkitt Chantel C, Symons Frank J
Breanne J. Byiers and Alyssa M. Merbler, University of Minnesota, Chantel C. Burkitt, Gillette Children's Specialty Healthcare, St. Paul, MN, and Frank J. Symons, University of Minnesota.
Am J Intellect Dev Disabil. 2025 Jan 1;130(1):1-12. doi: 10.1352/1944-7558-130.1.1.
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.
睡眠问题在雷特综合征和其他神经遗传综合征中很常见。活动记录仪是一种测量睡眠的经济有效且客观的方法。当前指南要求由照料者报告上床和起床时间，以便于对活动记录仪数据进行评分。本研究在38名患有雷特综合征及相关综合征的个体（年龄2至36岁，平均年龄 = 13.1岁）样本中，考察了纸质睡眠日记中照料者报告的上床和起床时间以及活动记录仪事件标记按钮按压记录的缺失情况和一致性，收集时间为两个14天的时间点。这两种来源之间的缺失率和差异率相对较高，且与临床严重程度和生活质量相关。总体而言，结果表明需要有不依赖于照料者报告的替代活动记录仪评分方法用于该人群。
