Study objectives: Previous estimated prevalence of narcolepsy in Europe was 47 patients per 100,000 persons, with a yearly incidence of 0.64-1.37 per 100,000. However, analyses of representative datasets from large cohorts are limited. This study aimed to estimate the population-based diagnostic prevalence and incidence of narcolepsy in Germany and to describe these patients and their health care resource utilization.
Methods: This study used the InGef research database, an anonymized representative dataset of 4 million persons covered by statutory health insurance in Germany. Patients with confirmed narcolepsy diagnoses in 2018 were included. Mid-p-exact tests were used to calculate 95% confidence intervals. Patients with narcolepsy diagnoses and narcolepsy-targeting therapy in 2014-2018 were included to describe health care resource utilization in the year prior to diagnosis.
Results: In 2018, diagnostic prevalence was estimated as 17.88 (95% confidence interval 16.45-19.40) and 12-month incidence as 0.79 (0.52-1.15) per 100,000 persons. Forty-six percent of patients were in psycho-behavioral therapeutic treatment and 61% of employees had sick leave days. One in three patients was hospitalized for any cause; 28% received antibiotics.
Conclusions: Diagnostic prevalence was lower, but incidence was consistent with previous reports, although previous estimates may diverge in terms of age/sex distributions. Patients showed a substantial utilization of health care resources, including sick leave and hospitalization. Almost half the patients underwent psycho-behavioral treatment in the year prior to diagnosis, which might indicate a high burden of psychiatric symptoms. The increased use of antibiotics could indicate more frequent infections than in the general population.
Citation: Kallweit U, Nilius G, Trümper D, Vogelmann T, Schubert T. Prevalence, incidence, and health care utilization of patients with narcolepsy: a population-representative study. J Clin Sleep Med. 2022;18(6):1531-1537.
Keywords: Germany; claims data; excessive daytime sleepiness; incidence; narcolepsy; prevalence.
© 2022 American Academy of Sleep Medicine.