Retrospective observational study of treatment and referral pathways of patients with epilepsy in Germany

PURPOSE: Epilepsy is one of the most common chronic neurological disorders. Epilepsy treatment is supported and managed through clinical practice guidelines which aim to improve patient care by educating and supporting prescribers. This is achieved through presenting unbiased information on treatment pathways. Using German national healthcare databases, we provide preliminary evidence of the likelihood of patients receiving optimal guideline recommended treatment, through treatment pathways, with, importantly, timely escalation for complex patients. METHODS: This population-based, retrospective, cross-sectional analysis of epilepsy treatment pathways utilized German statutory health insurance patient records from healthcare providers together with retail prescription data. Database identification of patients with epilepsy was based on ICD-10 codes and prescription data of 13 specific anti-seizure medications (ASM). Drug refractory (DR) patients with epilepsy were identified by treatment regime. Manually collected data from individual epilepsy centers validated the national results. RESULTS: This identification method determined national epilepsy prevalence was 0.67% of the German population with incidence of 0.09% and a female to male split of 49% to 51%. DR patients with epilepsy were determined at 36% of the epilepsy population. The proportion of neurologists nationally available to treat patients outside of hospital was 30%, with state-by-state variation. The data analysis led to preliminary models of patient referral pathways for all patients with epilepsy. Of DR patients with epilepsy 59% were found not to have accessed appropriate outpatient center (OPC) treatment by referral, as recommended by the guidelines. CONCLUSION: A persistence of under-referral of patients with epilepsy to epilepsy centers was identified. Patients with complex needs are too often inappropriately held in primary care. ASM prescribing highlights the need for structural and possibly policy-level reform in outpatient epilepsy care, to ensure patients with complex needs receive state of the art treatment at an appropriate OPC.