{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,7]],"date-time":"2026-07-07T04:54:58Z","timestamp":1783400098315,"version":"3.54.6"},"reference-count":31,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2019,6,27]],"date-time":"2019-06-27T00:00:00Z","timestamp":1561593600000},"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":[[2019,8]]},"abstract":"Abstract<\/jats:title>Objective<\/jats:title>To compare direct and indirect costs and quality of life (QoL) of pediatric and adult patients with Dravet syndrome (DS<\/jats:styled-content>), with drug\u2010resistant epilepsy (DRE<\/jats:styled-content>) and in seizure remission (SR<\/jats:styled-content>), and their caregivers, in Germany.<\/jats:p><\/jats:sec>Methods<\/jats:title>Questionnaire responses from 93 DS<\/jats:styled-content> patients and their caregivers were matched by age and gender with responses from 93 DRE<\/jats:styled-content> and 93 SR<\/jats:styled-content> patients collected in independent studies, and were compared across main components of QoL, direct costs (patient visits, medication use, care level, medical equipment, and ancillary treatments), and indirect costs (quitting job, reduced working hours, missed days).<\/jats:p><\/jats:sec>Results<\/jats:title>Mean total direct costs were highest for DS<\/jats:styled-content> patients (\u20ac4864 [median \u20ac3564] vs \u20ac3049 [median \u20ac1506] for DRE<\/jats:styled-content> [excluding outliers], P\u00a0<\/jats:italic>=\u00a0<\/jats:italic>0.01; and \u20ac1007 [median \u20ac311], P\u00a0<\/jats:italic><\u00a00.001 for SR<\/jats:styled-content>). Total lost productivity over 3\u00a0months was highest among caregivers of pediatric DS<\/jats:styled-content> (\u20ac4757, median \u20ac2841), compared with those of DRE<\/jats:styled-content> (\u20ac1541, P\u00a0<\/jats:italic><\u00a0<\/jats:italic>0.001; median \u20ac0) and SR<\/jats:styled-content> patients (\u20ac891, P\u00a0<\/jats:italic><\u00a0<\/jats:italic>0.001; median \u20ac0). The proportions of caregivers in employment were similar across groups (62% DS<\/jats:styled-content>, 63% DRE<\/jats:styled-content>, and 63% SR<\/jats:styled-content>) but DS<\/jats:styled-content> caregivers were more likely to experience changes to their working situation, such as quitting their job (40% DS<\/jats:styled-content> vs 16% DRE<\/jats:styled-content> and 9% SR<\/jats:styled-content>, P\u00a0<\/jats:italic><\u00a0<\/jats:italic>0.001 in both comparisons). KINDL<\/jats:styled-content> scores were significantly lower for DS<\/jats:styled-content> patients (62 vs 74 and 72, P\u00a0<\/jats:italic><\u00a0<\/jats:italic>0.001 in both comparisons), and lower than for the average German population (77). Pediatric caregiver EQ<\/jats:styled-content>\u20105D scores across all cohorts were comparable with population norms, but more DS<\/jats:styled-content> caregivers experienced moderate to severe depressive symptoms (24% vs 11% and 5%). Mean\u00a0Beck Depression Inventory (BDI<\/jats:styled-content>\u2010II<\/jats:styled-content>) score was significantly higher in DS<\/jats:styled-content> caregivers than either of the other groups (P\u00a0<\/jats:italic><\u00a0<\/jats:italic>0.001).<\/jats:p><\/jats:sec>Significance<\/jats:title>This first comparative study of Dravet syndrome to\u00a0difficult\u2010to\u2010treat epilepsy\u00a0and to epilepsy patients in seizure remission emphasizes the excess burden of DS<\/jats:styled-content> in components of QoL and\u00a0direct\u00a0costs. The caregivers of DS patients have a greater impairment of their working lives (indirect costs) and increased depression symptoms.<\/jats:p><\/jats:sec>","DOI":"10.1111\/epi.16099","type":"journal-article","created":{"date-parts":[[2019,6,27]],"date-time":"2019-06-27T18:19:45Z","timestamp":1561659585000},"page":"1697-1710","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":57,"title":["A multicenter, matched case\u2010control analysis comparing burden\u2010of\u2010illness in Dravet syndrome to refractory epilepsy and seizure remission in patients and caregivers in Germany"],"prefix":"10.1111","volume":"60","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6288-9915","authenticated-orcid":false,"given":"Adam","family":"Strzelczyk","sequence":"first","affiliation":[{"name":"Epilepsy Center Frankfurt Rhine\u2010Main and Department of Neurology Goethe\u2010University Frankfurt Frankfurt am Main Germany"},{"name":"LOEWE Center for Personalized Translational Epilepsy Research (CePTER) Goethe\u2010University Frankfurt Frankfurt am Main Germany"},{"name":"Epilepsy Center Hessen and Department of Neurology Philipps\u2010University Marburg Marburg (Lahn) 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 Frankfurt Frankfurt am Main Germany"},{"name":"LOEWE Center for Personalized Translational Epilepsy Research (CePTER) Goethe\u2010University Frankfurt Frankfurt am Main Germany"},{"name":"Department of Neuropediatrics Goethe\u2010University Frankfurt Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas","family":"Bast","sequence":"additional","affiliation":[{"name":"Epilepsy Center Kork Kehl\u2010Kork Germany"},{"name":"Faculty of Medicine University of Freiburg Freiburg i. 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Goethe\u2010University Frankfurt Frankfurt am Main Germany"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karl Martin","family":"Klein","sequence":"additional","affiliation":[{"name":"Epilepsy Center Frankfurt Rhine\u2010Main and Department of Neurology Goethe\u2010University Frankfurt Frankfurt am Main Germany"},{"name":"LOEWE Center for Personalized Translational Epilepsy Research (CePTER) Goethe\u2010University Frankfurt Frankfurt am Main Germany"},{"name":"Departments of Clinical Neurosciences, Medical Genetics and Community Health Sciences Hotchkiss Brain Institute & Alberta Children's Hospital Research Institute Cumming School of Medicine University of Calgary Calgary Alberta Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerhard","family":"Kluger","sequence":"additional","affiliation":[{"name":"Clinic for Neuropediatrics and Neurorehabilitation Epilepsy Center for Children and Adolescents Sch\u00f6n Klinik Vogtareuth 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