PURPOSE:We performed a comprehensive systematic review and meta-analysis of repetitive transcranial magnetic stimulation (rTMS) to explore its use as an adjunctive therapy for adult patients with drug-resistant epilepsy (DRE). METHODS:Following PRISMA guidelines, PubMed and Ovid MEDLINE databases were searched until January 2025 for English-language studies reporting pre- and post-rTMS seizure frequencies and detailed protocols in adult patients with DRE. Random-effects meta-analyses pooled standardized mean differences in weekly seizure frequency at immediate, 4-week, and 8-week follow-ups. Risk of bias was assessed using the Joanna Briggs Institute (JBI) critical appraisal tools, and evidence certainty was graded using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) and Oxford Centre for Evidence-Based Medicine (OCEBM) frameworks. RESULTS:12 studies involving 150 participants were included, with seven contributing to the meta-analysis. Meta-analysis demonstrated a small but statistically significant reduction in seizure frequency at 4 and 8 weeks following rTMS (pooled SMD -.49 [95% CI -.98 to -.01, p = .46] and -.19 [95% CI -.35 to -.02, p = .91]), with insignificant heterogeneity (I2 = 0%). In contrast, no statistically significant difference was observed immediately after rTMS (pooled SMD .19 [95% CI -1.69 to 1.31, p = .38]). Common adverse effects included headaches (14%-33%) and hearing problems (9%-14%). Quality of life improved significantly in two of three studies, and one study reported depression improvement in 67% of participants. Risk of bias was low in three studies, moderate in five, and high in four. CONCLUSION:rTMS use as adjunctive therapy for DRE demonstrated moderate (GRADE level 2) and low-quality (OCEBM level 3) evidence. rTMS was associated with modest reductions in seizure frequency in selected populations. However, effect sizes were small and heterogeneous. Larger, prospective, multicenter studies are needed to further evaluate its efficacy. REGISTRATION:International Prospective Register of Systematic Reviews (PROSPERO) (ID #CRD42024553998).
INTRODUCTION:In Germany, approximately 30% of people with epilepsy do not achieve seizure control with anti-seizure medication (ASM). ASM prescription timing and selection are crucial parameters affecting outcomes; however, the prescription characteristics of patients with refractory epilepsy in Germany are poorly understood. Therefore, understanding the pathways of how patients start their first ASM regimen and change to new ASM regimens could be a crucial step towards optimising therapeutic strategies and reducing the negative consequences of uncontrolled seizures. METHODS:A retrospective, population-based analysis was carried out using data from the German IQVIA™ Disease Analyzer (DA) and Longitudinal Prescriptions (LRx) databases. Over a 5-year period from 2018 to 2022, approximately 80% of Statutory Health Insurance (SHI)-reimbursed prescriptions were covered. Filtering processes were used to select and analyse patients treated only for epilepsy, and their prescription journeys. RESULTS:Prevalence and incidence in the selected group was in line with other reported data. Over a third of patients (36.6%) waited ≥ 1 day to receive their first ASM regimen prescription, and all patients stayed on their first ASM regimen for the longest period. Time to change from first and further regimens was on average > 300 days. Levetiracetam was the most prescribed ASM, and newer ASMs licensed in the past decade had much lower prescriptions. Prescribing differences were observed between specialities. DISCUSSION:This analysis contributes to the understanding of current epilepsy treatment shortfalls, showing delays in time to treatment and time to regimen change, and relatively low use of more recent ASMs. Additional work is required to evaluate how much improvement in outcome could be achieved by advancing first prescription timing and ASM selection, which may help reduce epilepsy disease burden.
BACKGROUND:Type 1 diabetes mellitus (T1DM) and autoimmune neurological syndromes (AINS), including autoimmune encephalitis-associated epilepsy/seizures (AEAE/S), share immune-mediated mechanisms linked to glutamic acid decarboxylase-65 autoantibodies (GAD-AABs). We reviewed features of patients with the syndrome of coexisting GAD-AAB-associated T1DM and AEAE/S. METHODS:According to PRISMA-ScR, English studies from PubMed, Web of Science, and Scopus were reviewed for patients with T1DM, AEAE/S, and GAD-AABs. RESULTS:We included 78 patients (64% female) from 50 studies. Age at first presentation ranged from 1 to 72 years [25.6 (±17.07)]. T1DM preceded AEAE/S in 40% (n = 31), followed it in 29% (n = 23), overlapped in 9% (n = 7), and unknown order in 22% (n = 17). GAD-AABs were detected in serum in 77/78 patients, and in CSF in 41/60 tested (68%). Brain MRI was abnormal in 41/54 cases (76%), mostly temporal T2-FLAIR hyperintensity (n = 25; 46%). EEG showed interictal epileptiform discharges in 42/51 (82%) and ictal patterns in 19 (37%). Autoimmune thyroid disorders (n = 33; 42%) and overlapping AINS (n = 13; 17%) were frequent. Antiseizure medication was reported in 46 cases (59%), and drug resistance in 32/46 (70%). Of 68 cases with data, 50 (73.5%) received immunotherapy, mainly intravenous immunoglobulins and corticosteroids. Follow-up showed variable seizure control, psycho-cognitive symptoms in 22%, and two deaths. CONCLUSION:The syndrome of GAD-AAB-associated AEAE/S + T1DM exhibits age-dependent variations in clinical presentation with predominantly focal temporal seizures. People with T1DM should be screened for AINS, and those with AEAE/S for autoimmune (endocrine) disorders. A comprehensive immunological assessment guides diagnosis and targeted therapy.
OBJECTIVE:This study evaluated the efficacy, safety, and tolerability of soticlestat as adjunctive therapy in children and young adults with Dravet syndrome (DS). METHODS:SKYLINE (NCT04940624) was a multicenter, randomized, double-blind, placebo-controlled, phase 3 trial that enrolled patients with DS aged 2-21 years with uncontrolled convulsive seizures (≥4/month despite adequate treatment). Participants received oral soticlestat 300 mg (weight adjusted) or matching placebo twice daily. The total study duration was 16 weeks, comprising 4-week dose titration and 12-week maintenance treatment periods. The primary endpoint was a comparison of monthly convulsive seizure frequency between baseline and the titration/maintenance periods. Key secondary endpoints included several modified Caregiver and Clinical Global Impression of Improvement (GI-I) scales for DS. RESULTS:One hundred forty-four participants were randomized (71 placebo, 73 soticlestat) with a mean (SD) age of 10.3 (5.0) years; 72 (50%) were male, and 117 (81.3%) were receiving ≥3 antiseizure medications. Median change from baseline in convulsive seizure frequency over the full treatment period was -8.64% with placebo (n = 71) and -22.16% with soticlestat (n = 73), a difference of -15.64% (p = .061); in the maintenance treatment period, these changes were -11.99% with placebo and -23.29% with soticlestat, a difference of -14.29% (p = .089). The proportion of participants with ≥50% reduction in convulsive seizures was 9.9% with placebo and 27.4% with soticlestat (nominal p = .008). Soticlestat showed clinically meaningful results in the Caregiver and Clinical GI-I, and Clinical GI-I Seizure Intensity and Duration scales over the 16-week treatment period (all nominal p-values ≤ .004). The most commonly reported treatment-emergent adverse events related to study drug were somnolence, change in seizure presentation, decreased appetite, and insomnia. SIGNIFICANCE:Although statistical significance was narrowly missed, soticlestat showed a numerical benefit over placebo for convulsive seizure decrease. Clinically meaningful benefits across multiple secondary endpoints were observed. No new safety concerns emerged.
OBJECTIVE:To develop and evaluate a simple-to-use checklist to support physicians with the timely diagnosis of Lennox-Gastaut syndrome (LGS). METHODS:A panel of 10 pediatric and adult epileptologists used the International League Against Epilepsy (ILAE) criteria for LGS classification and definition to develop seven questions for the checklist, through an iterative process. A scoring system formulated for the checklist yielded four distinct outcomes: likely LGS, possible LGS, unlikely LGS, and insufficient data. The checklist was then tested for reliability. Firstly, each expert selected LGS and non-LGS cases from their patient medical records and, for each case, provided the original diagnosis and answers to the checklist questions to an independent third party, who subsequently compared the outcome with the original diagnosis. The checklist questions were then refined based on the initial assessment. All cases were re-evaluated by the panel, and the results were collected as previously. Correct outcomes were defined as a perfect level of agreement with the original diagnosis provided by the expert (both LGS and non-LGS cases) or "possible LGS" outcome matching an original LGS diagnosis. RESULTS:Of the 120 cases evaluated (LGS, n = 64; non-LGS, n = 56), the outcome was correct for 95% (n = 114): 66.7% (n = 80) had a perfect level of agreement with the original diagnosis, and 28.3% (n = 34) were "possible LGS" matching an original LGS diagnosis. Incorrect matches, where the checklist outcome did not match the original LGS diagnosis, were due to the absence of documented characteristic EEG features and, related to young age, lack of cognitive/behavioral impairment. SIGNIFICANCE:The checklist offers a simple-to-use resource for treating physicians to support earlier LGS diagnosis, using the ILAE criteria as the framework. The findings also highlight the importance of EEG data for LGS diagnosis, that mandatory ILAE diagnostic features are not always initially present and may evolve over time, and the need to re-evaluate patients during follow-up.
IntroductionIn brain death determination (BDD), electroencephalography (EEG) is a commonly used diagnostic method in Germany for proving irreversibility of previously clinically proven loss of brain function. Despite the comprehensive availability of EEG in intensive care units, the reliability of EEG readings is often limited by biological or technical artefacts. This study aimed to determine the detection rate of electrocerebral inactivity (ECI) with a special focus on reliability and challenges of using EEG in BDD.MethodsA retrospective monocentric analysis of all BDD EEG data acquired from January 2015 to December 2025 at our tertiary care hospital was conducted. All identified BDD EEG reports were systematically analysed for their evaluability and for technical and biological artefacts. In addition, sociodemographic and patient-specific parameters that could influence the accuracy of EEG readings (e.g., craniotomies or intracranial drainages) were recorded.ResultsA total of 47 BDD EEG reports from 42 patients (women: 38.1%, mean age: 48.4 ± 14.4 years, median age: 52 years, age range: 21–78 years) were identified. In 81.0% of the patients, BDD could be confirmed using EEG. While biological artefacts did not significantly limit the evaluability of the EEG readings (p > 0.05), technical artefacts were significantly associated with a higher risk for limited EEG readability (p = 0.0309, relative risk: 4.2, 95% confidence interval: 1.3–13.8). This finding was primarily attributable to electrode artefacts (p = 0.0030), while other artefacts such as electrocardiogram or ventilation artefacts did not significantly impair readability (p > 0.05). Neither the aetiology of brain damage nor other patient-specific or sociodemographic parameters had any influence on the usability of EEG in BDD.DiscussionWe conclude that EEG is a reliable diagnostic tool in BDD in most cases if technically accurately recorded. Further studies are required to optimise existing technical errors in selected patients to increase the already high level of methodological reliability.
Abstract Given the role of glutamate signaling in glioma-associated epilepsy (GAE) and glioma cell growth, amino acid transporters have gained attention as therapeutic targets. Here, we conducted a comparative analysis of four key transporters—xCT, CD98, EAAT2, and ASCT1—with particular emphasis on xCT, due to the availability of clinically established inhibitors. Protein expression was quantified by immunoblot in snap-frozen tissue of tumor treatment-naïve IDH-mutant and IDH-wildtype gliomas (n = 87) with and without GAE. Quantitative whole-cell proteomics was performed on glioblastoma (GB) from 16 patients stratified for GAE and xCT expression levels. Gliomas from patients with GAE showed significantly higher EAAT2 and ASCT1 levels. In IDH-mutant versus IDH-wildtype glioma, xCT, EAAT2 and ASCT1 were significantly upregulated. Quantitative proteomics revealed 214 significantly regulated proteins in GB with GAE. Upregulated proteins showed enrichment for Gene Ontology (GO) terms involving neurotransmitter and amino acid turnover as well as lipid metabolism. Within the epilepsy group, xCT high-expressing tumors had distinct enrichment patterns. The 231 upregulated proteins partially overlapped with proteins upregulated in the epilepsy cohort, but additionally showed enrichment in pathways related to myelination and synaptic plasticity. In the survival analysis (n = 87), xCT expression and epilepsy did not affect patient survival in either IDH-mutant or IDH-wildtype tumors. Our findings highlight the role of amino acid transporters in GAE. The proteome analysis reveals distinct patterns in GB with epilepsy and also underscores the influence of xCT expression on the tumor proteome, which could inform the development of targeted anti-seizure medication.
Abstract People with epilepsy (PWE) are affected not only by the unpredictability of seizures, the risk of accidents, stigma, and comorbidities, but also by increased mortality. The most common directly epilepsy‑associated cause of death is sudden unexpected death in epilepsy patients (SUDEP). Across all PWE, SUDEP affects approximately 1 in 1,000 patients per year; depending on epilepsy severity, the annual SUDEP rate can exceed 10 per 1,000 patient years. Because many PWE live with the disorder for several decades, the cumulative SUDEP risk amounts to an average lifetime risk of 5–20%, rendering SUDEP a relevant contributor to mortality in PWE; however, considering its comparatively low annual incidence, SUDEP research remains challenging. Established risk factors and associated patient characteristics include frequent bilateral tonic–clonic seizures (BTCS) -especially when nocturnal-, living alone, long duration of epilepsy, and drug-resistant epilepsy. There are few observations in humans regarding the pathophysiological mechanisms underlying SUDEP, supplemented by findings from registries, animal models, and theoretical considerations. In the typical SUDEP cascade, a pathologically impaired arousal following a preceding, often nocturnal, BTCS appears to precipitate apnea and consequent bradycardia, progressing to fatal asystole. Various individual vulnerability factors contribute to this cascade. However, many aspects remain poorly understood. Two large, recently published prospective cohort studies have contributed valuable insights into biomarkers of SUDEP. Perisylvian epilepsies were identified as risk factors; furthermore, findings suggest dysfunctional brainstem respiratory regulation and impaired sleep homeostasis as potential mechanisms contributing to SUDEP. Nevertheless, on an individual level, it remains poorly understood why some patients die in the context of their first ever epileptic seizure, while others survive hundreds of BTCS. This narrative review provides an overview of the current state of SUDEP research and information on preventive measures used today, and delineates prospective directions for future investigation and prevention.
PURPOSE:To evaluate the concordance and clinical correlation of drug-drug interaction tools (DDITs) as clinical decision support systems (CDSS) in patients with epilepsy. METHODS:All patients from the Epi2020 study cohort receiving ≥1 anti-seizure medication (ASM) and ≥1 concomitant drug (CD) were included. Individual treatment regimens were analyzed for drug-drug interactions (DDIs) using five DDITs (Drugbank, Drugs.com, mediQ, Medscape and WebMD). To address the clinical significance of possible DDIs, Spearman correlation between the number of detected DDIs and two established adverse event (AE) metrics (LAEP, QOLIE-31) was performed using post-hoc correction by Fisher's z-transformation (FZT) for the total number of drugs taken. Multivariate ordinal regression analysis (MORA) was performed to identify ASM or CD classes associated with severe DDIs. RESULTS:Overall, 140 patients (57.9% female, median age 48 years) taking a median number of 4.0 drugs (2.0 ASMs and 2.0 CDs) were included. DDI were found in 51.4%-84.3% and severe interactions in 2.1%-17.8% of patients, depending on the DDIT. The concordance rate between DDITs was only 6.4% for all and only 63.6% for severe detected DDI, respectively. All concordant cases involved no detected interactions. The number of DDIs significantly correlated with AE metrics in 3/5 DDITs. Following the FZT, none of the DDI/AE correlations were superior to that between the number of DDIs and the number of drugs taken. MORA identified topiramate, valproate, zonisamide, hormones, and antipsychotics as independent predictors for the detection of severe DDIs. CONCLUSION:When using DDITs as CDSS, it is important to consider that the results of different tools may vary greatly from one another and do not necessarily correlate with clinical AEs. STUDY REGISTRATION:The Epi2020 study was registered under the trial registration number: DRKS00022024, U1111-1252-5331.
BACKGROUND:Status epilepticus (SE) is associated with substantial mortality and morbidity that increase with seizure duration. Prompt diagnosis is essential, but access to electroencephalography (EEG) is often limited outside regular working hours. We examined whether EEG delay due to prolonged waiting times for EEG is associated with worse outcomes. METHODS:This retrospective cohort study comprised adults (≥18 years; n=163) with first-time, non-anoxic, EEG-verified non-convulsive SE treated at Odense University Hospital, Denmark (2008-2017). EEG delay was defined as the time from last antiseizure treatment or clinical suspicion of SE to EEG confirmation. Outcomes were new neurological deficit at discharge and 2-year all-cause mortality. External validation used two retrospective German cohorts (n=906) differing in weekend EEG availability. RESULTS:Median EEG delay was 11.7 hours (IQR 3.5-22.6) and correlated with SE duration (r=0.2, p<0.01). Longer delay was associated with new neurological deficits at discharge (p<0.001 across delay groups; ρ=0.152, p=0.03) and higher long-term mortality (log-rank p=0.007), driven mainly by delays>22.6 hours. Multivariable analyses for 1 year mortality adjusting for factors including aetiology and age supported an independent association between delay and higher mortality. Delays were longer for Friday/Saturday admissions when next-day EEG was unavailable, with lower survival. In validation, lack of weekend EEG access showed etiology-dependent weekend-weekday mortality differences (eg, +18.8% in remote symptomatic SE; p=0.01) not seen in centres with weekend EEG availability. CONCLUSION:In this cohort, prolonged waiting times for EEG for the diagnosis of SE were associated with worse neurological outcomes at discharge and higher mortality. Improving timely EEG access, including weekends, may be a modifiable system-level target to improve SE outcomes.
BackgroundEpilepsy 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.MethodsWe 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.ResultsDespite 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.ConclusionEpilepsy 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.
Objective Dravet syndrome (DS) places tremendous burden on caregivers owing to the extent of required assistance and impact on daily living, as well as the risk to the individual with DS of premature mortality from sudden unexpected death in epilepsy and morbidity associated with nonseizure manifestations. This systematic literature review provides an up-to-date characterization of the mental health impacts experienced by caregivers of people with DS.Methods Databases (1974 to August 29, 2024 in Embase; 1946 to August 29, 2024 in MEDLINE) were searched for records containing keywords relevant to mental health in caregivers of people with DS. The study population comprised caregivers of people with DS with any or no intervention and/or comparator (and excluding pharmacologic interventions affecting caregiver burden-related outcomes) and with mental health outcomes that included depression, anxiety, fatigue, sleep quality, stress, mood, and quality of life scales.Results Database searches returned 519 records; 20 published articles were included. Most common were cross-sectional studies, with populations from Asia, Australia, Central/South America, Europe, and North America. Study sample sizes ranged from seven to 256 caregivers of people with DS; most caregivers were female. Depression and anxiety were reported in 11 and 10 articles, respectively; the prevalence of depression and anxiety among caregivers ranged 5%-66% and 5.2%-80%, respectively. Some studies used instruments to assess mental health outcomes; Beck Depression Inventory-II for depressive symptoms and the Hospital Anxiety and Depression Scale for symptoms of anxiety and depression were reported in three and two articles, respectively. Factors potentially associated with mental health including sleep quality, fatigue, and stress were commonly reported, with poor sleep quality and fatigue often linked to nighttime monitoring of people with DS.Significance Physicians should routinely assess the mental health of caregivers of people with DS; future studies should focus on identifying interventions that ease burden on caregivers.
OBJECTIVE:To assess the efficacy and safety of fenfluramine in patients with Dravet syndrome (DS) stratified by age, number of previously attempted antiseizure medications (ASMs), and SCN1A pathogenic variant status. METHODS:In this post hoc analysis, data from three randomized controlled trials (RCTs) in patients with DS (2-18 years) were pooled and stratified by age (<4; ≥4 years), number of previous ASMs (1-3; 4-6; ≥7), and SCN1A pathogenic variant status (SCN1A+; SCN1A-). Stratified groups were assessed and compared with the pooled placebo group (change in monthly convulsive seizure frequency [MCSF], longest convulsive seizure-free interval, and Clinical Global Impression-Improvement [CGI-I] scale scores rated by parents/caregivers and investigators), and safety (treatment-emergent adverse events [TEAEs]: frequency, days to onset, and proportion resolved). RESULTS:Among 348 patients included in the RCTs, 216 were randomized to fenfluramine (0.7 mg/kg/day, n = 88; 0.4 mg/kg/day [with stiripentol], n = 43; 0.2 mg/kg/day, n = 85) and 132 to placebo. Compared with placebo, fenfluramine treatment (all doses combined) resulted in greater MCSF reductions, greater increases in longest convulsive seizure-free intervals, and a higher proportion of parents/caregivers and investigators reporting clinically meaningful improvement ("Much Improved", "Very Much Improved") on CGI-I scores across all stratified groups. CGI-I scores were consistent across fenfluramine doses in most stratified groups, but patients with the fewest number of previous ASMs had the greatest frequency of clinically meaningful improvement on investigator-rated CGI-I scores. Safety outcomes were similar across all strata. Most TEAEs resolved by end-of-study. SIGNIFICANCE:Fenfluramine treatment was associated with improved seizure outcomes and global functioning compared with placebo regardless of age, number of previous ASMs, and SCN1A status in patients with DS. Fenfluramine was well-tolerated; no new safety signals were identified. Further studies with larger sample sizes (including adults) and a priori inferential analyses of stratified groups are warranted. PLAIN LANGUAGE SUMMARY:Patients with Dravet syndrome struggle with seizures and everyday life. In three studies, patients aged 2-18 years received fenfluramine or placebo (sugar pill). Fenfluramine lowered seizures without many side effects. Researchers combined results from these studies to see how fenfluramine worked in different patient groups based on age, number of previous medications, and a gene called SCN1A. They looked at seizure reduction and whether doctors felt patients had improved. In all groups, fenfluramine worked better than placebo, with similar side effects. Researchers believe fenfluramine helped these patients, but some groups were small, so these results need to be confirmed.
Trotz erheblicher therapeutischer Fortschritte bestehen in Deutschland weiterhin Versorgungslücken in der Behandlung von Epilepsiepatienten, insbesondere bei therapieresistenten Verläufen. Nationale Daten deuten auf eine unzureichende Überweisungspraxis und verspätete Einbindung spezialisierter Epilepsiezentren hin. Ziel dieser Studie war es, die ambulante Versorgungssituation in Brandenburg, einem Bundesland mit in bestimmten Regionen besonders begrenztem Zugang zu neurologischer Expertise anhand aktueller Verordnungs- und Überweisungsdaten zu analysieren. Ausgewertet wurden Daten aus den IQVIA™ Disease Analyzer- und IQVIA™ Longitudinal Prescriptions(LRx)-Datenbanken (2020–2022), ergänzt durch Überweisungsstatistiken der Epilepsieklinik Tabor (Brandenburg) und Kleinwachau (Sachsen). Eingeschlossen wurden Patienten mit gesicherter Epilepsiediagnose (ICD-10: G40.0–G40.9) und mindestens der Verordnung eines Anfallssuppressivums (ASM). Primäre Endpunkte waren der Anteil von Patienten mit ≥ 3 ASMs ohne Kontakt zu einem Neurologen/Neurologin, Überweisungsraten an spezialisierte Zentren sowie der Einfluss geografischer Distanzen auf das Überweisungsverhalten. Im Jahr 2022 hatten bundesweit 38
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.