OBJECTIVES: Narcolepsy is a neurological disorder characterized by daytime sleepiness, disrupted sleep and in some cases associated with episodes of cataplexy. The aim of this study is to describe the narcolepsy population in Sweden, including the treatment modalities, prevalence across regions, socio-demographic characteristics and healthcare resource utilization.

METHODS: The Swedish registers allow us to identify all individuals with registered narcolepsy diagnosis in Sweden over the period 1997-2016 (N=2,508, period prevalence). We identified seven different treatment modalities as well as one no-treatment cohort and assessed the healthcare resource utilization among narcolepsy patients using data from national patient register (outpatient and inpatient visits) and prescription register. A descriptive statistics approach has been applied to summarize characteristics of the study population.

RESULTS: Of 2,508 individuals with narcolepsy as a diagnosis, 1,086 (43,3%) were male, and 1,422 (56.7%) were female patients. The mean age at the time of diagnosis was 33.9 (±23.7) years. The number of patients with narcolepsy diagnosis varies across counties, with 17.7 per 100,000 individuals in Vasterbotten county to 29.8 per 100,000 individuals in Kronoberg county, Chi2 test (P=0.07). 271 patients received Sodium Oxybate in the period 2012-2017. Those patients had on average 3.6 narcolepsy-related outpatient visits within 12 months pre-index and 3.5 visits within 12 months after index. The patients within other treatment modalities had on average between 0.2 (antidepressant's users) and 2 (Dextroamphetamine/Lisdexamphetamine users) narcolepsy-related outpatient visits within 12 months pre-index; and between 0.2 (antidepressant’s users) and 2.2 (Methylphenidate users) narcolepsy-related outpatient visits within 12 months after index.

CONCLUSIONS: There are 2,508 individuals in Sweden with registered narcolepsy diagnosis in the period 1997-2016. The prevalence of narcolepsy significantly differs across the Swedish counties. Patients that redeem Sodium Oxybate have on average more narcolepsy-related outpatient visits within the year period before and after index date, compared to other treatment modalities.