Abstracts

Rationale: Devices which detect seizures in persons with epilepsy may reduce the potential for seizure-related injury, SUDEP or status epilepticus. We performed a survey of persons with epilepsy (PWE) and their caregivers to assess their perspectives regarding the values (reliability, accessibility) and priorities that should be considered in design of these devices.Methods: PWE and caregivers completed a survey which assessed the degree of worry of undetected seizures, the impact of this concern on diurnal functioning and sleep and the level of interest in using seizure detection device. These questions were answered with a numerical scale from 1-7 with lower values indicating less worry, less impact in daily function/sleep and less interest in using a device. Furthermore, questions regarding acceptable rates of false positive/negative alarms, acceptable times until caregivers are alerted, and insurance coverage were asked.Results: Ninety two surveys were completed (27 pediatric, 65 adults, 42 of which were completed by the patient and 50 by a family member/caregiver). Nearly half of subjects (N=45) had seizures at least weekly. Respondents expressed significant degree of worry if a seizure goes undetected with median score 6 (25-75 percentile range [Ra] = 5-7). The reported effect of worry on sleep as well as diurnal functioning was moderate ( median score 4, [Ra] 2-6 and [Ra] 2-5 respectively). There was significant degree of interest in the using a seizure detectiodetector (n, median score 7, [(Ra] 5-7). Fifty nine respondents (64%) indicated they would use the device all the time, 1515 (16%) only when the patient is alone, and 10 (11%) all time except when accompanied by a care provider. Seventy respondents (76%) expressed that the acceptable rate of false positives should be 25% or less [< 25% (n=63), 0% (n=7)]. Seventy respondents (76%) indicated that the acceptable time until caregivers are alerted should be < 1 minute [<30s (n=39), < 1min (n=31)]. Regarding the affordability and insurance coverage for the device, 61 respondents (66%) would not use it unless is covered, twenty two (24%) would use if not covered provided the cost was not prohibitive.Conclusions: There is significant worry of patients and caregivers regarding undetected seizures. Most respondents expressed a high level of interest in using a seizure detection device. The results also suggest that it would be preferred that the device could potentially be used all the time and that it would generate an alert via cell phone in less than a minute after the seizure is detected. Also, there is more concern about false negatives as compared to false positives. The accessibility and affordability was also a key point and the majority expressed that device would be used only if covered by insurance or if the cost is not prohibitive. The information from this survey is important to aid in the development and implementation of seizure detection devices, as it helps to understand the views of patients and care givers and may help incorporate their views in a more value sensitive design.