Epidemiology, healthcare resource use, and mortality in patients with tuberous sclerosis complex: A population-based study on German health insurance data

Purpose10-year retrospective study to assess burden of illness in individuals with tuberous sclerosis complex (TSC) identified from German healthcare data.MethodsPatients TSC were by International Classification Diseases code Q85.1. Patients epilepsy diagnosis or antiseizure medication (ASM) prescription after diagnosis.ResultsUsing data 2016 (final year), 100 patients (mean [range] age: 38 [1–86] years; male: 40%); prevalence: 7.9 per 100,000 (TSC), 2.2 (TSC epilepsy). During the 10-year period (2007–2016), 256 and followed up for 1,784 patient-years (epilepsy: 36%, 616 patient-years). manifestations/comorbidities (apart epilepsy) more frequently than without. Mean annual costs €6,139 patient-year (PPY), mostly attributable (35%) inpatient care (29%). incurred double those (standard deviation [SD]) hospitalisation rate (AHR) length stay (LOS) PPY: 0.5 (1.0) 5.9 (18.6) days TSC. AHR LOS greater (SD) number ASMs prescribed epilepsy): 3.0 (2.3) over entire observable time patient. Mortality rates (vs. control): 5.08% 1.69%, p<0.001) TSC, 7.53% 0.98%, epilepsy, 3.68% 2.03%, p = 0.003) without epilepsy.ConclusionHealthcare costs, resource utilisation, mortality epilepsy.