Epidemiology, Diagnostics, and Treatment of Narcolepsy in Germany: The DORMIO Study

Abstract

Objectives: This study aimed to investigate the prevalence, incidence, and real-world diagnostic and treatment patterns, healthcare resource utilization (HCRU), and associated costs of narcolepsy in Germany. Methods: This study was based on German claims data (2013–2018). Any patient with at least two outpatient specialist diagnoses and/or one inpatient diagnosis of narcolepsy was eligible for inclusion. Three cohorts were specified: 1) narcolepsy-prevalent patients alive on July 1, 2017; 2) narcolepsy-incident patients; and 3) newly treated patients. Descriptive analyses of the outcome measures were conducted. Results: We identified 133 prevalent narcolepsy patients (mean age: 46.2 years, 36.3% female), 71 incident patients, and 41 treatment starters. The prevalence of narcolepsy was 3.1–9.1 per 100,000 persons within the German population; the cumulative incidence between July 1, 2017, and June 30, 2018, was 0.83/100,000 persons. Among the incident patients, 62.0% underwent at least one predefined diagnostic procedure. Modafinil was the most prescribed medication for the treatment starters (46.3%) and prevalent patients (24.1%), but 59.4% of the prevalent patients did not receive any narcolepsy-specific pharmacological treatment. Prevalent patients with narcolepsy consulted physicians significantly more often than a healthy matched control group and experienced more all-cause hospitalizations. The mean total direct healthcare costs were higher for narcolepsy patients by €2,429 per patient-year. Conclusions: Not all narcolepsy patients undergo appropriate diagnostic procedures or narcolepsy-specific medications, as indicated by the treatment guidelines. More emphasis on the optimization of the management of this disease is needed, given its high prevalence and associated economic burden.

Epidemiology and Real-World Treatment of Incident Diffuse Large B-cell Lymphoma (DLBCL): A German Claims Data Analysis

“…Regional bias may be present, as AOK PLUS only insures patients from two German states (Saxony/Thuringia). However, in accordance with the German legal framework, health service reimbursement rules are identical across Germany, and previous studies have found no major regional differences in health care structures between Saxony/Thuringia and other German states [ 27 ].…”

“…This retrospective claims data analysis used an anonymized dataset provided by the regional German statutory health insurance fund AOK PLUS, which covers 3.6 million people insured in Germany (regions of Saxony and Thuringia) [ 27 ]. In Germany, statutory health insurance is mandatory for individuals whose annual income is below a fixed limit, which applies to around 90% of the German population [ 28 , 29 ].…”

“…The end of an outpatient LOT was defined as the prescription of a new ATC code not included in the previous regimen or as a treatment discontinuation (a gap of at least 60 days after end of supply; end of the LOT was defined as the end of supply). Days of supply were based on the daily defined dose of the agent [ 27 ]. For treatment discontinuation, all agents of the regimen had to be discontinued, except for supportive care agents and monotherapy rituximab or lenalidomide.…”