Recent research has shown that the NightWatch system, which was co-developed by researchers at UMC Utrecht, reliably alerts children in the event of severe epileptic seizures at home. The research also shows that the system reduces stress for parents and carers.
Epileptic seizures come unexpectedly and lead to unsafe situations. If your child could have a major (motor, tonic-clonic) seizure in the night, you as a parent want to be there for safety and support. But how do you wake up in time?
People with epilepsy and their caregivers have a great need for good and reliable seizure detection. Such as the Nightwatch, which detects seizures and then also sends an alarm to the caretakers. EpilepsyNL sees the need for this growing: “We get a lot of questions by phone and in emails, we see it in the applications for our loan scheme, and because of the high priority that seizure detection is given in the Epilepsy Breakthrough Agenda. This study provides substantiation that good detection and alarming of an epileptic seizure really reduces stress.” Explains Laura M’Rabet, MT member of Knowledge and Innovation at EpilepsyNL.
Testing in the home situation
Various detection systems have been developed, but often not yet tested in people’s homes. That is why we do not yet know what the effect is on stress, sleep and quality of life of patients (children) and carers (parents). The NightWatch was developed in the Netherlands, a medical device that is worn around the upper arm during sleep. The NightWatch has been extensively tested, now also with children with epilepsy in their own bedroom at home. It was also examined whether it reduces the burden on the caregivers.
“For many of the attack detection devices, there is little evidence that they work properly. And the research that has been done before, mainly took place in hospitals,” says researcher Anouk van Westhrenen, who is clearly proud of the result of her research: “This is the only study in the world in which a large group of their home situation has been investigated.” Neurologist Roland Thijs also mentions this: “This research is very valuable, because with this data we know how the NightWatch works at home. This gives a much more reliable picture because the children sleep in their own bed, at their parents’ home and not in a clinic. Which of course always affects the quality of sleep and therefore also the measurements.”
Nightwatch detects almost all major attacks
SEIN, the expertise center for epilepsy and sleep medicine, conducted research into the use of the NightWatch in the home environment together with the UMC Utrecht and Kempenhaeghe. The researchers involved children aged 4 to 16 years who had at least one weekly major motor attack during sleep. They compared a two-month period without the NightWatch with a two-month period when NightWatch was used.
The main result was the performance of the NightWatch. The researchers involved 53 children and analyzed 2310 nights. There were no less than 552 major motor attacks. The NightWatch alerted almost all major attacks, only ten percent of all attacks were missed. The number of false alarms was low, with an average of one every three nights.
Reducing stress in caregivers
Caregivers (parents) reported less stress while using the NightWatch, while sleep quality and quality of life remained the same.
Anouk: “In addition to detecting attacks, we also looked at the effect on the family. Parents received questionnaires about what it was like to use the NightWatch and what the effect was on stress, sleep and quality of life.” Most parents were very satisfied and found the NightWatch easy and convenient to use. The feeling of stress clearly decreased. “But the period was probably too short for improving sleep and quality of life. It takes more time to fully trust such a device. That is why I expect even more positive effects in the long term.”
Follow-up investigation into false alarms
To detect attacks as effectively as possible, you want a sensitive system. But the more sensitive you set the system, the greater the chance of false alarms. A good balance has therefore been found in the NightWatch with good and useful attack detection.
“We do think it can be even better. For example, we saw more false alarms in children with severe epilepsy and intellectual disabilities. They move differently and much more”, says Anouk about a possible follow-up to the study. “We could fine-tune the attack detection algorithm even further. In this way, attack detection can be increasingly personalized.”
The scientific paper on the findings has been published in the magazine Epilepsy.
About the teleconsortium
This research was carried out by the TeleConsortium, a collaboration between SEIN expertise center for epilepsy and sleep medicine, the Academic Center for Epileptology Kempenhaeghe/Maastricht, the University Medical Center Utrecht, Eindhoven University of Technology, EpilepsyNL, LivAssured, CLB and Maasstad Hospital. This research was made possible by ZonMW and Health Holland.
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2023-05-26 12:16:24
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