J Sleep Med.  2021 Aug;18(2):88-99. 10.13078/jsm.210007.

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

• Müller S
• Brandes A
• Knierim J
• Novakovic M
• Wilke T
• Maywald U
• Fietze I

• KMID: 2519716
• DOI: http://doi.org/10.13078/jsm.210007

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.