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 and 1 others
PMID 39709989WHAT IT FOUND
In 38 families of people with Rett-related syndromes, parent sleep diaries were often more complete than actigraphy button presses.
Disagreements over 45 minutes were common, and both sources were difficult to trust.
Key findings
01Across 992 nights, valid actigraphy button presses and diary times were available for 70.7% of bedtimes and 68.5% of wake times, and missing button presses caused most missingness.
02When both sources were present, the median discrepancy was 12.0 minutes at bedtime and 16.2 minutes at wake, but differences over 45 minutes occurred for 10.4% of all bedtimes and 15.5% of all wake times.
03Only 1 family had valid actigraphy button presses for all bedtimes, and 5 families had valid button presses for all wake times.
STILL TO COME
How it was doneWhat they foundWhat it means for OTs
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What it does not show
The analysis included 38 families, and the paper calls the sample a small convenience sample. There was no gold standard for actual bed and wake times, so it is unclear whether diary times, button times, or both were inaccurate. Families living away from a parent or guardian, such as group homes, were excluded. Three recordings were lost because of device errors or non-wearing, and within-recording loss was due to non-wearing. No parent demographic information was collected, so parental stress or burden could not be evaluated directly. Some collection periods occurred during early U.S. COVID-19 lockdowns, when routines and stress may have been unusual. Families with more missing data also had larger discrepancies when both sources were available, so reported agreement may overestimate total agreement.
Declared interests
The supplied text does not include a conflict-of-interest or funding declaration. The journal metadata lists NIH extramural research support.
The easy way to misread this
Do not assume parent diaries or actigraphy button presses give accurate bed and wake times. The study had no gold standard, and the two sources were often missing or differed by more than 45 minutes.