Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes
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| Title: | Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes |
|---|---|
| Language: | English |
| Authors: | Breanne J. Byiers, Alyssa M. Merbler, Chantel C. Burkitt, Frank J. Symons |
| Source: | American Journal on Intellectual and Developmental Disabilities. 2025 130(1):1-12. |
| Availability: | American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: https://meridian.allenpress.com/aaidd |
| Peer Reviewed: | Y |
| Page Count: | 12 |
| Publication Date: | 2025 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Sleep, Neurodevelopmental Disorders, Psychomotor Skills, Genetic Disorders, Parents, Caregivers, Physical Activity Level, Evaluation Methods, Children, Young Adults, Adolescents, Interrater Reliability, Error of Measurement, Robustness (Statistics) |
| DOI: | 10.1352/1944-7558-130.1.1 |
| ISSN: | 1944-7515 1944-7558 |
| 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. |
| Abstractor: | As Provided |
| Entry Date: | 2025 |
| Accession Number: | EJ1459621 |
| Database: | ERIC |
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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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| ISSN: | 1944-7515 1944-7558 |
| DOI: | 10.1352/1944-7558-130.1.1 |
