Critical incidents, nocturnal supervision, and caregiver knowledge on SUDEP in patients with Dravet syndrome: A prospective multicenter study in Germany.
Margarita MaltsevaFelix RosenowSusanne Schubert-BastSilke FlegeMarkus WolffSarah von SpiczakRegina TrollmannSteffen SyrbeSusanne RufTilman PolsterBernd A NeubauerThomas MayerJulia JacobsGerhard KurlemannGerhard KlugerKerstin Alexandra KlotzMatthias KieslichLara KayFrauke HornemannUlrich BettendorfAstrid BertscheThomas BastAdam StrzelczykPublished in: Epilepsia (2023)
Critical incidents and the need for resuscitation are frequently reported by caregivers and may be related to high mortality and SUDEP rates in DS. Resuscitation training is welcomed by caregivers and should be continuously provided. Oxygen monitoring devices are frequently used and considered useful by caregivers.