{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T16:00:17Z","timestamp":1785859217250,"version":"3.56.0"},"reference-count":33,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2023,11,10]],"date-time":"2023-11-10T00:00:00Z","timestamp":1699574400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Epilepsia"],"published-print":{"date-parts":[[2024,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objective<\/jats:title><jats:p>The aim was to investigate the monitoring, interventions, and occurrence of critical, potentially life\u2010threatening incidents in patients with Dravet syndrome (DS) and caregivers\u2019 knowledge about sudden unexpected death in epilepsy (SUDEP).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>This multicenter, cross\u2010sectional study of patients with DS and their caregivers in Germany consisted of a questionnaire and prospective diary querying the disease characteristics and demographic data of patients and caregivers.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Our analysis included 108 questionnaires and 82 diaries. Patients with DS were 49.1% male (<jats:italic>n<\/jats:italic>\u2009=\u200953), with a mean age of 13.5\u2009(SD \u00b1\u200910.0\u2009years) and primary caregivers were 92.6% (<jats:italic>n<\/jats:italic>\u2009=\u2009100) female, with a mean age of 44.7\u2009(SD \u00b1\u200910.6\u2009years). Monitoring devices were used regularly by 75.9% (<jats:italic>n<\/jats:italic>\u2009=\u200982) of caregivers, and most monitored daily\/nightly. Frequently used devices were pulse oximeters (64.6%), baby monitors (64.6%), thermometers (24.1%), and Epi\u2010Care (26.8%). Younger caregiver and patient age and history of status epilepticus were associated with increased use of monitoring, and 81% of monitor users reported having avoided a critical incident with nocturnal monitoring. The need for resuscitation due to cardiac or respiratory arrest was reported by 22 caregivers (20.4%), and most cases (72.7%) were associated with a seizure. Caregivers reported frequently performing interventions at night, including oropharyngeal suction, oxygenation, personal hygiene, and change of body position. Most caregivers were well informed about SUDEP (<jats:italic>n<\/jats:italic>\u2009=\u2009102; 94%) and monitored for a lateral or supine body position; however, only 39.8% reported receiving resuscitation training, whereas 52.8% (<jats:italic>n<\/jats:italic>\u2009=\u200957) knew what to do in case the child's breathing or heart activity failed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Significance<\/jats:title><jats:p>Critical incidents and the need for resuscitation are reported frequently 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.<\/jats:p><\/jats:sec>","DOI":"10.1111\/epi.17799","type":"journal-article","created":{"date-parts":[[2023,10,17]],"date-time":"2023-10-17T09:34:26Z","timestamp":1697535266000},"page":"115-126","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Critical incidents, nocturnal supervision, and caregiver knowledge on <scp>SUDEP<\/scp> in patients with Dravet syndrome: A prospective multicenter study in Germany"],"prefix":"10.1111","volume":"65","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8598-4357","authenticated-orcid":false,"given":"Margarita","family":"Maltseva","sequence":"first","affiliation":[{"name":"Epilepsy Center Frankfurt Rhine\u2010Main and Department of Neurology Goethe\u2010University and University Hospital Frankfurt  Frankfurt am Main Germany"},{"name":"Center for Personalized Translational Epilepsy Research (CePTER) Goethe\u2010University Frankfurt  Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Felix","family":"Rosenow","sequence":"additional","affiliation":[{"name":"Epilepsy Center Frankfurt Rhine\u2010Main and Department of Neurology Goethe\u2010University and University Hospital Frankfurt  Frankfurt am Main Germany"},{"name":"Center for Personalized Translational Epilepsy Research (CePTER) Goethe\u2010University Frankfurt  Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1545-7364","authenticated-orcid":false,"given":"Susanne","family":"Schubert\u2010Bast","sequence":"additional","affiliation":[{"name":"Epilepsy Center Frankfurt Rhine\u2010Main and Department of Neurology Goethe\u2010University and University Hospital Frankfurt  Frankfurt am Main Germany"},{"name":"Center for Personalized Translational Epilepsy Research (CePTER) Goethe\u2010University Frankfurt  Frankfurt am Main Germany"},{"name":"Department of Neuropediatrics Goethe\u2010University and University Hospital Frankfurt  Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Silke","family":"Flege","sequence":"additional","affiliation":[{"name":"Dravet Syndrom e.V.  Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5640-0888","authenticated-orcid":false,"given":"Markus","family":"Wolff","sequence":"additional","affiliation":[{"name":"Center of Pediatric Neurology Vivantes Hospital Neukoelln  Berlin Germany"},{"name":"Swiss Epilepsy Center Klinik Lengg AG  Z\u00fcrich Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"von\u00a0Spiczak","sequence":"additional","affiliation":[{"name":"Northern German Epilepsy Centre for Children and Adolescents  Kiel\u2010Raisdorf Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6031-8537","authenticated-orcid":false,"given":"Regina","family":"Trollmann","sequence":"additional","affiliation":[{"name":"Department of Neuropediatrics Friedrich\u2010Alexander University  Erlangen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Steffen","family":"Syrbe","sequence":"additional","affiliation":[{"name":"Division of Pediatric Epileptology, Center for Pediatrics and Adolescent Medicine University Hospital Heidelberg  Heidelberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susanne","family":"Ruf","sequence":"additional","affiliation":[{"name":"Department of Neuropediatrics University of T\u00fcbingen  T\u00fcbingen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9531-7312","authenticated-orcid":false,"given":"Tilman","family":"Polster","sequence":"additional","affiliation":[{"name":"Department of Epileptology Bielefeld University, Krankenhaus Mara, Epilepsy Center Bethel  Bielefeld Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernd A.","family":"Neubauer","sequence":"additional","affiliation":[{"name":"Department of Neuropediatrics Justus\u2010Liebig\u2010University Giessen  Giessen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Mayer","sequence":"additional","affiliation":[{"name":"Epilepsy Center Kleinwachau  Dresden\u2010Radeberg Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julia","family":"Jacobs","sequence":"additional","affiliation":[{"name":"Department of Neuropediatrics and Muscle Disorders, Medical Center University of Freiburg  Freiburg im Breisgau Germany"},{"name":"Department of Pediatrics and Clinical Neurosciences, Cumming School of Medicine University of Calgary  Calgary Alberta Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerhard","family":"Kurlemann","sequence":"additional","affiliation":[{"name":"St. Bonifatius Hospital  Lingen Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerhard","family":"Kluger","sequence":"additional","affiliation":[{"name":"Clinic for Neuropediatrics and Neurorehabilitation, Epilepsy Center for Children and Adolescents Schoen Clinic Vogtareuth  Vogtareuth Germany"},{"name":"Research Institute \u201cRehabilitation, Transition, and Palliation\u201d PMU Salzburg  Salzburg Austria"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1601-5384","authenticated-orcid":false,"given":"Kerstin A.","family":"Klotz","sequence":"additional","affiliation":[{"name":"Department of Neuropediatrics and Muscle Disorders, Medical Center University of Freiburg  Freiburg im Breisgau Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Matthias","family":"Kieslich","sequence":"additional","affiliation":[{"name":"Epilepsy Center Frankfurt Rhine\u2010Main and Department of Neurology Goethe\u2010University and University Hospital Frankfurt  Frankfurt am Main Germany"},{"name":"Department of Neuropediatrics Goethe\u2010University and University Hospital Frankfurt  Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lara","family":"Kay","sequence":"additional","affiliation":[{"name":"Epilepsy Center Frankfurt Rhine\u2010Main and Department of Neurology Goethe\u2010University and University Hospital Frankfurt  Frankfurt am Main Germany"},{"name":"Center for Personalized Translational Epilepsy Research (CePTER) Goethe\u2010University Frankfurt  Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Frauke","family":"Hornemann","sequence":"additional","affiliation":[{"name":"Department of Neuropediatrics Leipzig University Hospital for Children and Adolescents  Leipzig Germany"},{"name":"Department of Child and Adolescent Medicine Klinikum Chemnitz  Chemnitz Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ulrich","family":"Bettendorf","sequence":"additional","affiliation":[{"name":"Neuropediatric Practice  Hirschaid 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