Epidemiology, Healthcare Resource Use, and Mortality in Patients with Tuberous Sclerosis Complex: A Population-Based Study on German Health Insurance DATA

Author(s)

Strzelczyk A1, Schubert-Bast S1, Zöllner JP1, Simon A2, Wyatt G3, Holland R3, Rosenow F1
1Epilepsy Center Frankfurt Rhine-Main, University Hospital Frankfurt and Goethe-University Frankfurt, Frankfurt, Germany, 2Vilua Healthcare GmbH, Munich, Germany, 3GW Research Ltd, Cambridge, UK

OBJECTIVES

Retrospective, 10-year (2007−2016) study reporting prevalence, cost, hospitalisation, length of stay (LOS), medication, and mortality for patients with tuberous sclerosis complex (TSC), a rare, multisystemic, genetic disorder.

METHODS

Patients with TSC were identified from the German Vilua Healthcare research database (anonymised health insurance data for >4 million individuals) using International Classification of Disease (ICD)-10 code Q85.1. Epilepsy was identified by ≥1 epilepsy ICD code (G40*/G41*) or ≥1 antiepileptic drug (AED) prescription. Mortality was compared with age-, sex-, and time-matched controls.

RESULTS

In 2016, 100 patients with TSC (mean [range] age: 38 [186] years; male: 40%) were identified. Standardised prevalence of TSC was 7.9 per 100,000 people. From 2007−2016, mean annual healthcare costs were 6,139 per patient-year (PPY), mostly attributable to medication (2,144, 35%), inpatient care (1,807, 29%), multidisciplinary services (942, 15%), and outpatient care (749, 12%). Patients with epilepsy incurred greater total annual costs than those without (9,091 vs. 4,583 PPY). Mean (SD; range) annual hospitalisation rate (all TSC patients) was 0.5 (1.0; 09) with LOS 20.5 (30.1; 1264) days PPY; hospitalisations and LOS were numerically greater in patients with epilepsy than without. In patients with TSC, mean (SD; range) number of different medications prescribed: 6.3 (5.1; 133) PPY and 19.2 (14.4; 183) per patient over the entire observable time. In patients with TSC and epilepsy, 2.0 (1.1) different AEDs were prescribed PPY. Mortality rates (vs. control): all TSC 4.38% (1.80%); with epilepsy 6.67% (1.04%); without epilepsy 3.11% (2.11%).

CONCLUSIONS

Healthcare costs and resource utilisation were higher in patients with TSC and epilepsy versus those without.

Conference/Value in Health Info

2020-11, ISPOR Europe 2020, Milan, Italy

Value in Health, Volume 23, Issue S2 (December 2020)

Code

PND50

Topic

Economic Evaluation, Epidemiology & Public Health, Health Service Delivery & Process of Care

Topic Subcategory

Disease Classification & Coding, Prescribing Behavior

Disease

Neurological Disorders

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