Caregivers’ experiences and expectations regarding seizure monitoring – A survey-based study

OBJECTIVE: Monitoring devices for children with epilepsy may reduce parental stress and the risk of sudden unexpected death in epilepsy. This study explored caregiver's experiences, expectations, and barriers related to seizure monitoring. METHODS: A survey of caregivers of children with epilepsy collected data on demographics, epilepsy characteristics, prior monitoring experience, expectations and reported issues. RESULTS: Between November 2023 and April 2024, 172 caregivers participated. The children's median age was 9 years (IQR ± 8), 49% were female. Experience with monitoring was reported by 63%. Monitored children had more nocturnal and tonic-clonic seizures, more seizures with heart rate or breathing changes, higher rates of status epilepticus, and greater need for polytherapy and rescue medication (p < 0.05). A median of two devices per child (IQR ± 1) were used; 79% were non-epilepsy-specific tools such as baby monitors, cameras, pulse oximeters, or ECG monitors. Key motivations for monitoring were recognizing life-threatening situations (83%), observing the child during seizures (79%) and improving parental stress and sleep (67%). These goals were achieved in 81% of cases. Main barriers were unreliable seizure detection and frequent false alarms, though these caused discontinuation in fewer than 7% of cases. Among caregivers without monitoring experience, 70% expressed interest in seizure detection devices, yet 88% reported that the option had never been discussed with their physician. SIGNIFICANCE: Non-specific devices are primarily used for seizure detection and largely meet caregivers' needs for timely intervention and improved sleep. Barriers include false alarms, detection issues, and a lack of physician recommendations.