How often do caregivers attend their child when a seizure detection device alerts for a nocturnal major motor seizure?

Objective: Development in seizure detection devices has focused mainly on detection performance. Yet, in order to serve their function in preventing harmful situations and even sudden unexpected death in epilepsy (SUDEP), caregivers need to respond to seizure alarms. This aspect has not been studied so far. We therefore determined caregiver attendance in response to an alarm from a seizure detection device in a real-world family home setting and evaluated the determinants affecting this rate.

Methods: We examined caregiver attendance using video recordings from the PROMISE trial, a home-based study designed to determine the performance of the NightWatch seizure detection device. Attendance was recorded when a caregiver approached the child within 15 min after the alarm. We evaluated attendance to each true alarm, and we randomly selected one false alarm of the same subject, if available, to evaluate attendance as well. We also collected several child- and alarm-related determinants, which we analyzed for effect on attendance using a generalized estimated equation (GEE).

Results: We included 461 true positive alarms for 31 children and matched them to 311 false alarms. The overall attendance rate for true positive alarms was 64%, with a median individual attendance rate of 100% per child. The individual attendance rate to false alarms (median 50%) was significantly lower when comparing the response to true positive alarms (p < .001). Nine caregivers always responded to alarms regardless of their nature, whereas two never attended to any alarm. The presence of seizure-related sounds (odds ratio [OR] 7.73, 95% confidence interval [CI] 3.74-15.96) and having a lower seizure frequency (OR 0.37, 95% CI 0.19-0.75) were associated with higher attendance rates.

Significance: We found that rates of attendance to nocturnal major motor seizure alarms were generally high, although variation existed among caregivers. These findings highlight the need for counseling when implementing seizure detection devices in epilepsy care.