The Direct Costs of Dravet's Syndrome before and after Diagnosis Assessment
The objective of this study was to estimate the direct cost before and after diagnosis assessment in patients with Dravet's syndrome (DS). The basis of the economic study was to calculate the costs of health care before and after diagnosis of DS. We retrospectively evaluated all SCN1A positive patients with phenotype of DS treated in our hospital. Statistical analyses were performed by IBM SPSS Statistics 24.0 software. After the diagnosis of DS, there was a significant decline of health care costs (−85.6%) an average of €29.4 ± 26.1 monthly per patient. We estimated the monthly costs at €204.5 ± 167 (median: €193.9, range: €35.5–534.4) per patient before DS diagnosis. The major cost was for hospitalization in neurological department: €43.3 ± 52 (median: €21.9, range: €9.5–179.4) per patient. Minimal cost per patient per months before DS diagnosis was cost of psychological testing/care and complementary rehabilitation (0.13 and 0.6% of total cost). After DS diagnosis, the major cost was focused on nonhospitalization care of patients (64.8%), minimal (€0) for genetic testing and major for outpatient care (18%, mean: €5.3, median: €7). DS results in essential health care utilization and high financial burden before diagnosis elucidation caused by repeated hospitalization and extensive diagnostics tests of “epileptic encephalopathy of unknown etiology.” The results of this study point out that early assessment of the diagnosis leads to significant decrease of the financial costs because of adequate therapeutic management and exclusion of redundant diagnostic testing after elucidation of correct diagnosis.
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Received: 23 August 2019
Accepted: 12 July 2020
13 October 2020 (online)
© 2020. Thieme. All rights reserved.
Georg Thieme Verlag KG
Stuttgart · New York
- 1 Dravet C. The core Dravet syndrome phenotype. Epilepsia 2011; 52 (Suppl. 02) 3-9
- 2 Dravet C. Dravet syndrome history. Dev Med Child Neurol 2011; 53 (Suppl. 02) 1-6
- 3 Whittington MD, Knupp KG, Vanderveen G, Kim C, Gammaitoni A, Campbell JD. The direct and indirect costs of Dravet syndrome. Epilepsy Behav 2018; 80: 109-113
- 4 Strzelczyk A, Schubert-Bast S, Reese JP, Rosenow F, Stephani U, Boor R. Evaluation of health-care utilization in patients with Dravet syndrome and on adjunctive treatment with stiripentol and clobazam. Epilepsy Behav 2014; 34: 86-91
- 5 Danhofer P, Horák O, Fajkusová L, Pavloušková L, Ošlejšková H. Dravet syndrome: severe myoclonic epilepsy in infancy- case reports. Cesk Slov Neurol N 2014; 77/110 (02) 243-246
- 6 Strzelczyk A, Kalski M, Bast T. et al. Burden-of-illness and cost-driving factors in Dravet syndrome patients and carers: a prospective, multicenter study from Germany. Eur J Paediatr Neurol 2019; 23 (03) 392-403
- 7 Scheffer IE, Berkovic S, Capovilla G. et al. ILAE classification of the epilepsies: position paper of the ILAE Commission for Classification and Terminology. Epilepsia 2017; 58 (04) 512-521
- 8 Riechmann J, Strzelczyk A, Reese JP. EpiPaed Study Group. et al. Costs of epilepsy and cost-driving factors in children, adolescents, and their caregivers in Germany. Epilepsia 2015; 56 (09) 1388-1397
- 9 Strzelczyk A, Nickolay T, Bauer S. et al. Evaluation of health-care utilization among adult patients with epilepsy in Germany. Epilepsy Behav 2012; 23 (04) 451-457