Patient and caregiver view on seizure detection devices: A survey study

Abstract

Purpose: Seizure detection devices (SDD) may reduce the potential for seizure-related injury, SUDEP or status epilepticus. We performed a survey of persons with epilepsy (PWE) and caregivers to assess their perspectives regarding the features and priorities that should be considered in the design of these devices.

Methods: PWE/caregiver completed a survey which assessed the worry of undetected seizures, the impact of this concern on diurnal functioning/sleep and the level of interest in using SDD. Furthermore, questions regarding acceptable rates of false positive (FP)/negative (FN) alarms, acceptable time to generate an alarm and insurance coverage were asked.

Results: 92 surveys were completed. Respondents expressed significant worry of undetected seizures. The impact of this concern on sleep and diurnal functioning was moderate. There is significant interest in using SDDs. Most would use SDD constantly. The acceptable FP-FN rate should be ≤25%. The time until caregivers are alerted should be ≤1min. Regarding affordability, the majority would not use SDD unless covered by insurance and a few would use if not covered but affordable.

Conclusions: The concern of undetected seizures is high among PWE and caregivers. Most expressed a high interest in using SDDs. Accuracy and affordability were key.

Keywords: Devices; Seizure detection; Survey.