TY  - JOUR
A1  - Strzelczyk, Adam
A1  - Rosenow, Felix
A1  - Zöllner, Johann Philipp
A1  - Simon, Andreas
A1  - Wyatt, Geoffrey
A1  - Holland, Rowena
A1  - Schubert-Bast, Susanne
T1  - Epidemiology, healthcare resource use, and mortality in patients with tuberous sclerosis complex: a population-based study on german health insurance data
T2  - Seizure
N2  - Purpose: 10-year retrospective study to assess burden of illness in individuals with tuberous sclerosis complex (TSC) identified from German healthcare data. Methods: Patients with TSC were identified by International Classification of Diseases code Q85.1. Patients with epilepsy were identified by epilepsy diagnosis or antiseizure medication (ASM) prescription after TSC diagnosis. Results: Using data from 2016 (final study year), 100 patients with TSC were identified (mean [range] age: 38 [1–86] years; male: 40%); prevalence: 7.9 per 100,000 (TSC), 2.2 per 100,000 (TSC with epilepsy). During the 10-year study period (2007–2016), 256 patients with TSC were identified and followed up for 1,784 patient- years (epilepsy: 36%, 616 patient-years). TSC manifestations/comorbidities (apart from epilepsy) were identi- fied more frequently in patients with epilepsy than without. Mean annual healthcare costs for patients with TSC were €6,139 per patient-year (PPY), mostly attributable to medication (35%) and inpatient care (29%). Patients with epilepsy incurred costs more than double those without. Mean (standard deviation [SD]) annual hospi- talisation rate (AHR) and length of stay (LOS) PPY: 0.5 (1.0) and 5.9 (18.6) days for TSC. AHR and LOS were greater in patients with epilepsy than without. Mean (SD) number of ASMs prescribed (TSC with epilepsy): 3.0 (2.3) over the entire observable time per patient. Mortality rates (vs. control): 5.08% (vs. 1.69%, p<0.001) for TSC, 7.53% (vs. 0.98%, p<0.001) for TSC with epilepsy, 3.68% (vs. 2.03%, p = 0.003) for TSC without epilepsy. Conclusion: Healthcare costs, resource utilisation, and mortality were greater in patients with TSC and epilepsy than those without epilepsy.
KW  - Tuberous sclerosis complex
KW  - Epilepsy
KW  - Prevalence
KW  - Burden of illness
KW  - Healthcare costs
KW  - Healthcare resource utilisation
Y1  - 2021
UR  - http://publikationen.ub.uni-frankfurt.de/frontdoor/index/index/docId/64490
UR  - https://nbn-resolving.org/urn:nbn:de:hebis:30:3-644901
SN  - 1532-2688
N1  - This study was funded by GW Pharmaceuticals, Cambridge, UK. Authors Geoffrey Wyatt and Rowena Holland, employed by GW Pharma Ltd, had the following involvement with the study: study design, interpretation of data, the writing of the article, and the decision to submit it for publication.
VL  - 91
SP  - 287
EP  - 295
PB  - Elsevier
CY  - [Oxford]
ER  -