ERIC Number: EJ1459621
Record Type: Journal
Publication Date: 2025
Pages: 12
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1944-7515
EISSN: EISSN-1944-7558
Available Date: N/A
Challenges in Using Parent-Reported Bed and Wake Times for Actigraphy Scoring in Rett-Related Syndromes
Breanne J. Byiers; Alyssa M. Merbler; Chantel C. Burkitt; Frank J. Symons
American Journal on Intellectual and Developmental Disabilities, v130 n1 p1-12 2025
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.
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)
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
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A
Author Affiliations: N/A