Burden-of-illness and cost-driving factors in Dravet syndrome patients and carers: A prospective, multicenter study from Germany

Journal article


Publication Details

Author(s): Strzelczyk A, Kalski M, Bast T, Wiemer-Kruel A, Bettendorf U, Kay L, Kieslich M, Kluger G, Kurlemann G, Mayer T, Neubauer BA, Polster T, Herting A, von Spiczak S, Trollmann R, Wolff M, Irwin J, Carroll J, Macdonald D, Pritchard C, Klein KM, Rosenow F, Schubert-Bast S
Journal: European Journal of Paediatric Neurology
Publication year: 2019
ISSN: 1090-3798


Abstract

Introduction: Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy. This study estimated cost, cost-driving factors and quality of life (QoL) in patients with Dravet syndrome and their caregivers in a prospective, multicenter study in Germany. Methods: A validated 3–12-month retrospective questionnaire and a prospective 3-month diary assessing clinical characteristics, QoL, and direct, indirect and out-of-pocket (OOP) costs were administered to caregivers of patients with DS throughout Germany. Results: Caregivers of 93 patients (mean age 10.1 years, ±7.1, range 15 months–33.7 years) submitted questionnaires and 77 prospective diaries. The majority of patients (95%) experienced at least one seizure during the previous 12 months and 77% a status epilepticus (SE) at least once in their lives. Over 70% of patients had behavioural problems and delayed speech development and over 80% attention deficit symptoms and disturbance of motor skills and movement coordination. Patient QoL was lower than in the general population and 45% of caregivers had some form of depressive symptoms. Direct health care costs per three months were a mean of €6,043 ± €5,825 (median €4054, CI €4935-€7350) per patient. Inpatient costs formed the single most important cost category (28%, €1,702 ± €4,315), followed by care grade benefits (19%, €1,130 ± €805), anti-epileptic drug (AED) costs (15%, €892 ± €1,017) and ancillary treatments (9%, €559 ± €503). Total indirect costs were €4,399 ±€ 4,989 (median €0, CI €3466-€5551) in mothers and €391 ± €1,352 (median €0, CI €195-€841) in fathers. In univariate analysis seizure frequency, experience of SE, nursing care level and severe additional symptoms were found to be associated with total direct healthcare costs. Severe additional symptoms was the single independently significant explanatory factor in a multivariate analysis. Conclusions: This study over a period up to 15 months revealed substantial direct and indirect healthcare costs of DS in Germany and highlights the relatively low patient and caregiver QoL compared with the general population.


FAU Authors / FAU Editors

Trollmann, Regina Prof. Dr.
Professur für Kinder- u. Jugendmedizin Schwerpunkt Neuropädiatrie


External institutions with authors

Bethel Epilepsy Center
Eberhard Karls Universität Tübingen
Epilepsiezentrum Kork
Goethe-Universität Frankfurt am Main
Justus-Liebig-Universität Gießen
Kleinwachau - Sächsisches Epilepsiezentrum Radeberg gGmbH
Norddeutsches Epilepsiezentrum Raisdorf
Schön Kliniken
Westfälische Wilhelms-Universität (WWU) Münster
Wickenstones
Zogenix International, Ltd.


How to cite

APA:
Strzelczyk, A., Kalski, M., Bast, T., Wiemer-Kruel, A., Bettendorf, U., Kay, L.,... Schubert-Bast, S. (2019). Burden-of-illness and cost-driving factors in Dravet syndrome patients and carers: A prospective, multicenter study from Germany. European Journal of Paediatric Neurology. https://dx.doi.org/10.1016/j.ejpn.2019.02.014

MLA:
Strzelczyk, Adam, et al. "Burden-of-illness and cost-driving factors in Dravet syndrome patients and carers: A prospective, multicenter study from Germany." European Journal of Paediatric Neurology (2019).

BibTeX: 

Last updated on 2019-23-05 at 16:23