Incidence, healthcare resource use, and costs of narcolepsy: a French claims database analysis

Narcolepsy is a rare, chronic central nervous system hypersomnolence disorder, for which incidence and overall burden remain difficult to accurately estimate. This study assessed the incidence, disease burden, healthcare costs, and sick leave associated with narcolepsy in France using the nationwide claims database (SNDS, Système National des Données de Santé), by comparing incident narcolepsy cases with matched controls.

This retrospective cohort study was based on anonymized healthcare data from the French nationwide claims database (SNDS) between 2014 and 2019, including both adults and children. The incidence of narcolepsy in France, and its associated disease burden, healthcare resource utilization (HCRU) and related costs, were assessed in individuals with narcolepsy compared with age-, sex-, and region-matched controls.

The study identified 1650 incident narcolepsy cases (INCS; mean [SD] age 28.7 [15.1] years, 54.7% female) and 13,652 matched controls (mean [SD] age 27.8 [15.4] years, 53.7% female). Annual narcolepsy incidence rates (95% CI) were 0.45 to 0.55 cases per 100,000 person-years and remained stable over time. HCRU and sickness leave were greater for INCS vs controls, with approximately 3 times more visits to specialists. Associated costs were twice as high for INCS vs controls (mean total costs: €3626.12 vs €1236.61 per year). HCRU and associated costs were highest within the first 12 months post-diagnosis and were found to decline thereafter.

This study provides a robust estimation of narcolepsy incidence in children and adults and highlights the significant healthcare and economic burden compared with controls.