Epidemiology, healthcare resource use, and mortality in patients with tuberous sclerosis complex: a population-based study on german health insurance data
- 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.
Author: | Adam StrzelczykORCiDGND, Felix RosenowORCiDGND, Johann Philipp ZöllnerORCiDGND, Andreas SimonORCiD, Geoffrey WyattORCiD, Rowena Holland, Susanne Schubert-BastORCiDGND |
---|---|
URN: | urn:nbn:de:hebis:30:3-644901 |
DOI: | https://doi.org/10.1016/j.seizure.2021.06.027 |
ISSN: | 1532-2688 |
Parent Title (English): | Seizure |
Publisher: | Elsevier |
Place of publication: | [Oxford] |
Document Type: | Article |
Language: | English |
Date of Publication (online): | 2021/06/29 |
Date of first Publication: | 2021/06/29 |
Publishing Institution: | Universitätsbibliothek Johann Christian Senckenberg |
Release Date: | 2022/03/14 |
Tag: | Burden of illness; Epilepsy; Healthcare costs; Healthcare resource utilisation; Prevalence; Tuberous sclerosis complex |
Volume: | 91 |
Page Number: | 9 |
First Page: | 287 |
Last Page: | 295 |
Note: | 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. |
HeBIS-PPN: | 49475558X |
Institutes: | Medizin |
Dewey Decimal Classification: | 6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit |
Sammlungen: | Universitätspublikationen |
Licence (German): | Creative Commons - Namensnennung 4.0 |