A multicenter, matched case‐control analysis comparing burden‐of‐illness in Dravet syndrome to refractory epilepsy and seizure remission in patients and caregivers in Germany

Medientyp: E-Artikel
Titel: A multicenter, matched case‐control analysis comparing burden‐of‐illness in Dravet syndrome to refractory epilepsy and seizure remission in patients and caregivers in Germany
Beteiligte: Strzelczyk, Adam; Schubert‐Bast, Susanne; Bast, Thomas; Bettendorf, Ulrich; Fiedler, Barbara; Hamer, Hajo M.; Herting, Arne; Kalski, Malin; Kay, Lara; Kieslich, Matthias; Klein, Karl Martin; Kluger, Gerhard; Kurlemann, Gerhard; Mayer, Thomas; Neubauer, Bernd A.; Polster, Tilman; von Spiczak, Sarah; Stephani, Ulrich; Trollmann, Regina; Wiemer‐Kruel, Adelheid; Wolff, Markus; Irwin, John; Carroll, Joe; Pritchard, Clive;
Erschienen: Wiley, 2019
Erschienen in: Epilepsia
Sprache: Englisch
DOI: 10.1111/epi.16099
ISSN: 0013-9580; 1528-1167
Schlagwörter: Neurology (clinical) ; Neurology
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Beschreibung: <jats:title>Abstract</jats:title><jats:sec><jats:title>Objective</jats:title><jats:p>To compare direct and indirect costs and quality of life (QoL) of pediatric and adult patients with Dravet syndrome (<jats:styled-content style="fixed-case">DS</jats:styled-content>), with drug‐resistant epilepsy (<jats:styled-content style="fixed-case">DRE</jats:styled-content>) and in seizure remission (<jats:styled-content style="fixed-case">SR</jats:styled-content>), and their caregivers, in Germany.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>Questionnaire responses from 93 <jats:styled-content style="fixed-case">DS</jats:styled-content> patients and their caregivers were matched by age and gender with responses from 93 <jats:styled-content style="fixed-case">DRE</jats:styled-content> and 93 <jats:styled-content style="fixed-case">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><jats:sec><jats:title>Results</jats:title><jats:p>Mean total direct costs were highest for <jats:styled-content style="fixed-case">DS</jats:styled-content> patients (€4864 [median €3564] vs €3049 [median €1506] for <jats:styled-content style="fixed-case">DRE</jats:styled-content> [excluding outliers], <jats:italic>P </jats:italic>=<jats:italic> </jats:italic>0.01; and €1007 [median €311], <jats:italic>P </jats:italic>< 0.001 for <jats:styled-content style="fixed-case">SR</jats:styled-content>). Total lost productivity over 3 months was highest among caregivers of pediatric <jats:styled-content style="fixed-case">DS</jats:styled-content> (€4757, median €2841), compared with those of <jats:styled-content style="fixed-case">DRE</jats:styled-content> (€1541, <jats:italic>P </jats:italic><<jats:italic> </jats:italic>0.001; median €0) and <jats:styled-content style="fixed-case">SR</jats:styled-content> patients (€891, <jats:italic>P </jats:italic><<jats:italic> </jats:italic>0.001; median €0). The proportions of caregivers in employment were similar across groups (62% <jats:styled-content style="fixed-case">DS</jats:styled-content>, 63% <jats:styled-content style="fixed-case">DRE</jats:styled-content>, and 63% <jats:styled-content style="fixed-case">SR</jats:styled-content>) but <jats:styled-content style="fixed-case">DS</jats:styled-content> caregivers were more likely to experience changes to their working situation, such as quitting their job (40% <jats:styled-content style="fixed-case">DS</jats:styled-content> vs 16% <jats:styled-content style="fixed-case">DRE</jats:styled-content> and 9% <jats:styled-content style="fixed-case">SR</jats:styled-content>,<jats:italic> P </jats:italic><<jats:italic> </jats:italic>0.001 in both comparisons). <jats:styled-content style="fixed-case">KINDL</jats:styled-content> scores were significantly lower for <jats:styled-content style="fixed-case">DS</jats:styled-content> patients (62 vs 74 and 72, <jats:italic>P </jats:italic><<jats:italic> </jats:italic>0.001 in both comparisons), and lower than for the average German population (77). Pediatric caregiver <jats:styled-content style="fixed-case">EQ</jats:styled-content>‐5D scores across all cohorts were comparable with population norms, but more <jats:styled-content style="fixed-case">DS</jats:styled-content> caregivers experienced moderate to severe depressive symptoms (24% vs 11% and 5%). Mean Beck Depression Inventory (<jats:styled-content style="fixed-case">BDI</jats:styled-content>‐<jats:styled-content style="fixed-case">II</jats:styled-content>) score was significantly higher in <jats:styled-content style="fixed-case">DS</jats:styled-content> caregivers than either of the other groups (<jats:italic>P </jats:italic><<jats:italic> </jats:italic>0.001).</jats:p></jats:sec><jats:sec><jats:title>Significance</jats:title><jats:p>This first comparative study of Dravet syndrome to difficult‐to‐treat epilepsy and to epilepsy patients in seizure remission emphasizes the excess burden of <jats:styled-content style="fixed-case">DS</jats:styled-content> in components of QoL and direct costs. The caregivers of DS patients have a greater impairment of their working lives (indirect costs) and increased depression symptoms.</jats:p></jats:sec>
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