Prevalence, incidence, and health care utilization of patients with narcolepsy: a population-representative study

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.

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.

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.

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.

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.