ArticleJournal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine2022
Prevalence, incidence, and health care utilization of patients with narcolepsy: a population-representative study.
Article in Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 14 citations in OpenAlex.
- The impact of narcolepsy and idiopathic hypersomnia on work-related outcomes: a systematic literature review.Sleep advances : a journal of the Sleep Research Society · 2026Review
- Article
- Patient experiences of narcolepsy and idiopathic hypersomnia in the Nordics: a patient journey map.Journal of sleep research · 2025Article
- Healthcare Burden and Productivity Loss Due to Narcolepsy in Sweden.Clocks & sleep · 2025Article
- Epidemiology, patient characteristics, and treatment patterns of patients with narcolepsy in Sweden: a non-interventional study using secondary data.Sleep advances : a journal of the Sleep Research Society · 2024Article
- Online screening for excessive daytime sleepiness: a feasibility study.Frontiers in psychology · 2024Article
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Authors and funding
5 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
STUDY
objectivesPrevious 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.
methodsThis 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.
resultsIn 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.
conclusionsDiagnostic 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.
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