Automated non-EEG based seizure detection: Do users have a say?

PURPOSE: Quality of life of patients with epilepsy depends largely upon unpredictability of seizure occurrence and would improve by predicting seizures or at least by detecting seizures (after their clinical onset) and react timely. Detection systems are available and researched, but little is known about the actual need and user preferences. The first indicates the market potential; the second allows us to incorporate user requirements into the engineering process.

METHODS: We questioned 20 pediatric and young adult patients, 114 caregivers, and 21 involved medical doctors and described, analyzed, and compared their experiences with systems for seizure detection, their opinions on usefulness and purpose of seizure detection, and their requirements for such a device.

RESULTS: Experience with detection systems is limited, but 65% of patients and caregivers and 85% of medical doctors express the usefulness, more so during night than day. The need is higher in patients with more severe intellectual disability. The higher the seizure frequency, the higher the need, opinions in the seizure-free group being more divided. Most patients and caregivers require 100% correct detection, and on average, one false alarm per seizure (one per week for those seizure-free) is accepted. Medical doctors allow 90% correct detections and between two false alarms per week and one per month depending on seizure frequency. Detection of seizures involving heavy movement and falls is judged most important by patients and caregivers and second to most by medical doctors. The latter judge heart rate monitoring most relevant, both towards seizure detection and SUDEP (sudden unexpected death in epilepsy) prevention.

CONCLUSIONS: The results, including a goal of 90% correct detections and one false alarm per seizure, should be considered in development of seizure detectors.