Silent refractoriness in epilepsy care: cross-sectoral analysis of prescribing patterns, referrals and workforce...

Epilepsy care in Germany is structured through a delegated outpatient model in which long-term management is primarily delivered by office-based neurologists and general practitioners, while specialized epilepsy centers provide escalation for complex cases. Whether this structure enables timely access to advanced therapies in high-burden regions remains unclear. Objective: To evaluate structural disparities in prescribing patterns, referral behavior, and workforce distribution in Saxony, a federal state with above-average epilepsy prevalence and treatment intensity.

We conducted a cross-sectoral analysis integrating IQVIA LRx® prescription data (2024), Disease Analyzer prevalence estimates, and anonymized outpatient referral data from the state's only DGfE-certified epilepsy center (Kleinwachau). Utilization was assessed using Days of Therapy (DOT), with a focus on levetiracetam (LEV) as a proxy for focal epilepsy care. Workforce distribution was estimated using Bundesärztekammer data. Findings were contextualized through a multidisciplinary expert panel.

Despite high treatment intensity, substantial gaps in escalation were observed. While approximately 36% of patients met a pharmacological proxy for drug resistance, only a minority accessed specialized center care. Prescribing patterns showed a persistent preference for LEV across all sectors, with marked regional variation in LEV: lamotrigine ratios that aligned with levels of specialization and proximity to the epilepsy center. Adoption of newer antiseizure medications was concentrated in specialized hubs. Referral activity remained uneven, with several regions demonstrating minimal connectivity to formal escalation pathways.

Epilepsy care in Saxony is characterized by "silent refractoriness," in which therapy-resistant patients remain in decentralized care without systematic progression to specialized evaluation. Addressing this gap requires implementation of standardized referral criteria, strengthened cross-sectoral networks, and regional accountability mechanisms. These findings provide a scalable framework for aligning decentralized care systems with evidence-based escalation pathways.