Direct and Indirect Costs of Refractory Epilepsy in a Tertiary Epilepsy Center in Germany

Summary:  Purpose: There are only few studies on the costs of epilepsy in Germany. Therefore, we performed a pilot study to estimate the direct and indirect costs of refractory epilepsy in a German epilepsy center. Methods:  A “prevalence‐based,” cross‐sectional convenience sample of adults with active epilepsy attending the outpatient clinic of our tertiary epilepsy center was evaluated. Seizure‐free patients and patients presenting with their first seizure were excluded. Direct and indirect costs were prospectively recorded over a three‐month period using questionnaires and a patient diary. Cost driving factors were identified. Results:  One hundred one patients were included (40.7 ± 15.2 years; disease duration: 18.1 ± 15.3 years; 6 patients had focal epilepsy with simple partial seizures only, 28 with complex partial seizures, 43 with secondarily generalized tonic–clonic seizures; 20 had idiopathic generalized epilepsy with generalized tonic–clonic seizures). The total costs of epilepsy per patient were in average € 2610 ± 4200 over the three‐month period. Direct cost contributed 39% to the total costs. Costs of anticonvulsant medication were the main contributor to the direct costs while indirect costs were caused mainly by losses due to early retirement. Cost driving factors included higher seizure frequency, longer disease duration, ictal falls, and situationally inappropriate complex behavior during or after the seizure. Conclusions:  Indirect costs were higher than direct costs in adult patients with active epilepsy attending a German epilepsy center. Medication contributed the most to the direct costs and early retirement was the main factor for the indirect costs. The costs of poorly controlled epilepsy in this German study were above average of the European costs of epilepsy.