G338(P) Epilepsy alarm/monitor - Questionnaire survey of the Parent's perception of the use of the epilepsy alarm

Abstract

Introduction The risks due to epilepsy are reduced by good seizure control and staying safe. Parents of children with epilepsy often have sleepless nights in view of their concerns about night time seizures. There are different devices including different types of alarms/monitors available, and choosing the appropriate device among them depends on the type of seizure. Aim The aim of our survey was to review the various types of devices used by parents to monitor seizures and their perception and usefulness regarding these devices. Method A survey was conducted by using a parent’s questionnaire in children with epilepsy. Results 19 parents of children with epilepsy participated in the survey. Among the surveyed, children age were grouped as: less than 1 year: 2 children; 15 yrs: 2 children; 5–10yrs: 7 children; and 10–15yrs old: 8 children. 58% (11) were male and 42% (8) were female. 73% (14/19) had more than one type of seizure, 84% (16/19) had difficulty to control epilepsy. 73% (14/19) had symptomatic epilepsy and 42% (8/19) had everyday seizure activity. 14/19 (73%) parents used some sort of device to monitor seizures. Amongst these 6/14 (42%) used baby monitor, 3/14 (21%) video baby monitor, 2/14 (14%) used proper epilepsy alarm and 1 each used CCTV(7%); CCTV + Epilepsy monitor (7%); and saturation monitor (7%) respectively. The 3 parents who had used a proper epilepsy alarm at some point didn’t find it useful due to false alarms. 2 parents sleep in the same room as the child and didn’t use any alarm. 78% (11/14) of parents using a device for monitoring seizures found it useful. Conclusion Our survey demonstrates that most parents of children with epilepsy find it useful to have some device especially baby monitor with or without video to monitor seizure. So we as Paediatricians need to initiate discussion about Epilepsy alarm/monitor with parents. This will help to reassure them, reduce their stress and also probably reduce status epilepticus and sudden unexpected death in epilepsy.

SUDEP and seizure safety communication: Assessing if people hear and act

“…There is evidence suggesting that seizures could be identified using audio detection devices in at least 50% of individuals (8). A survey suggested that most parents found it useful to have some device, especially an audio monitor, to reduce stress and provide reassurance (9). There is no evidence to suggest that sophisticated monitoring systems are more sensitive to identify seizures than a simple audio device (10).…”