A multicenter, matched case-control analysis comparing burden of illness among patients with tuberous sclerosis complex related epilepsy, generalized idiopathic epilepsy, and focal epilepsy in Germany.

Autor:	Lappe L; Goethe-University Frankfurt, Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Hospital Frankfurt, Theodor-Stern-Kai 7, 60596, Frankfurt am Main, Germany.; Center for Personalized Translational Epilepsy Research (CePTER), Goethe-University Frankfurt, Frankfurt am Main, Germany., Hertzberg C; Department of Neuropediatrics, Vivantes Klinikum Neukölln, Berlin, Germany., Knake S; Epilepsy Center Hessen and Department of Neurology, Philipps-University Marburg, Marburg, Germany., Knuf M; Department of Pediatrics, Klinikum Worms, Worms, Germany.; Department of Pediatrics, University Medicine Mainz, Mainz, Germany., von Podewils F; Department of Neurology, Epilepsy Center, University Medicine Greifswald, Greifswald, Germany., Willems LM; Goethe-University Frankfurt, Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Hospital Frankfurt, Theodor-Stern-Kai 7, 60596, Frankfurt am Main, Germany.; Center for Personalized Translational Epilepsy Research (CePTER), Goethe-University Frankfurt, Frankfurt am Main, Germany., Kovac S; Department of Neurology with Institute of Translational Neurology, University Münster, Münster, Germany., Zöllner JP; Goethe-University Frankfurt, Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Hospital Frankfurt, Theodor-Stern-Kai 7, 60596, Frankfurt am Main, Germany.; Center for Personalized Translational Epilepsy Research (CePTER), Goethe-University Frankfurt, Frankfurt am Main, Germany., Sauter M; Klinikum Kempten, Klinikverbund Allgäu, Kempten/Allgäu, Germany., Kurlemann G; St. Bonifatius Hospital, Lingen, Germany., Mayer T; Epilepsy Center Kleinwachau, Radeberg, Germany., Bertsche A; Department of Neuropediatrics, University Hospital for Children and Adolescents, Greifswald, Germany., Marquard K; Department of Pediatric Neurology, Psychosomatics and Pain Management, Klinikum Stuttgart, Stuttgart, Germany., Meyer S; Department of General Pediatrics and Neonatology, Franz-Lust Klinik für Kinder und Jugendliche, Karlsruhe, Germany., Schäfer H; Department of Nephrology, Klinikum rechts der Isar, Technische Universität München, Munich, Germany., Thiels C; Division of Nephrology, Medizinische Klinik und Poliklinik IV, Klinikum der LMU München - Innenstadt, Munich, Germany.; Department of Neuropediatrics and Pediatric Epileptology, University Hospital of Ruhr University Bochum, Bochum, Germany., Zukunft B; Department of Nephrology and Internal Intensive Care, Charité - University Medicine Berlin, Berlin, Germany., Schubert-Bast S; Goethe-University Frankfurt, Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Hospital Frankfurt, Theodor-Stern-Kai 7, 60596, Frankfurt am Main, Germany.; Center for Personalized Translational Epilepsy Research (CePTER), Goethe-University Frankfurt, Frankfurt am Main, Germany.; Goethe-University Frankfurt, Department of Neuropediatrics, University Hospital Frankfurt, Frankfurt am Main, Germany., Reese JP; Institute of Clinical Epidemiology and Biometry, University of Würzburg, Würzburg, Germany., Rosenow F; Goethe-University Frankfurt, Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Hospital Frankfurt, Theodor-Stern-Kai 7, 60596, Frankfurt am Main, Germany.; Center for Personalized Translational Epilepsy Research (CePTER), Goethe-University Frankfurt, Frankfurt am Main, Germany., Strzelczyk A; Goethe-University Frankfurt, Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, University Hospital Frankfurt, Theodor-Stern-Kai 7, 60596, Frankfurt am Main, Germany. strzelczyk@med.uni-frankfurt.de.; Center for Personalized Translational Epilepsy Research (CePTER), Goethe-University Frankfurt, Frankfurt am Main, Germany. strzelczyk@med.uni-frankfurt.de.; Epilepsy Center Hessen and Department of Neurology, Philipps-University Marburg, Marburg, Germany. strzelczyk@med.uni-frankfurt.de.
Jazyk:	angličtina
Zdroj:	Neurological research and practice [Neurol Res Pract] 2024 May 30; Vol. 6 (1), pp. 29. Date of Electronic Publication: 2024 May 30.
DOI:	10.1186/s42466-024-00323-6
Abstrakt:	Background: Depending on the underlying etiology and epilepsy type, the burden of disease for patients with seizures can vary significantly. This analysis aimed to compare direct and indirect costs and quality of life (QoL) among adults with tuberous sclerosis complex (TSC) related with epilepsy, idiopathic generalized epilepsy (IGE), and focal epilepsy (FE) in Germany. Methods: Questionnaire responses from 92 patients with TSC and epilepsy were matched by age and gender, with responses from 92 patients with IGE and 92 patients with FE collected in independent studies. Comparisons were made across the main QoL components, direct costs (patient visits, medication usage, medical equipment, diagnostic procedures, ancillary treatments, and transport costs), indirect costs (employment, reduced working hours, missed days), and care level costs. Results: Across all three cohorts, mean total direct costs (TSC: €7602 [median €2620]; IGE: €1919 [median €446], P < 0.001; FE: €2598 [median €892], P < 0.001) and mean total indirect costs due to lost productivity over 3 months (TSC: €7185 [median €11,925]; IGE: €3599 [median €0], P < 0.001; FE: €5082 [median €2981], P = 0.03) were highest among patients with TSC. The proportion of patients with TSC who were unemployed (60%) was significantly larger than the proportions of patients with IGE (23%, P < 0.001) or FE (34%, P = P < 0.001) who were unemployed. Index scores for the EuroQuol Scale with 5 dimensions and 3 levels were significantly lower for patients with TSC (time-trade-off [TTO]: 0.705, visual analog scale [VAS]: 0.577) than for patients with IGE (TTO: 0.897, VAS: 0.813; P < 0.001) or FE (TTO: 0.879, VAS: 0.769; P < 0.001). Revised Epilepsy Stigma Scale scores were also significantly higher for patients with TSC (3.97) than for patients with IGE (1.48, P < 0.001) or FE (2.45, P < 0.001). Overall Quality of Life in Epilepsy Inventory-31 items scores was significantly lower among patients with TSC (57.7) and FE (57.6) than among patients with IGE (66.6, P = 0.004 in both comparisons). Significant differences between patients with TSC and IGE were also determined for Neurological Disorder Depression Inventory for Epilepsy (TSC: 13.1; IGE: 11.2, P = 0.009) and Liverpool Adverse Events Profile scores (TSC: 42.7; IGE: 37.5, P = 0.017) with higher score and worse results for TSC patients in both questionnaires. Conclusions: This study is the first to compare patients with TSC, IGE, and FE in Germany and underlines the excessive QoL burden and both direct and indirect cost burdens experienced by patients with TSC. (© 2024. The Author(s).)
Databáze:	MEDLINE
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