The burden of narcolepsy with cataplexy: How disease history and clinical features influence socio-economic outcomes

Objective: To investigate in narcolepsy with cataplexy (NC) patients of working age (18–65 years) the
influence of age at onset, age at diagnosis and clinical features on socio-occupational conditions, disease-
related economic burden, and quality of life.
Methods: One hundred consecutive patients underwent a semistructured interview on socio-occupational
aspects, NC-related direct and indirect costs, and NC history. Questionnaires were used to evaluate
excessive daytime sleepiness, cataplexy, depressive symptoms, and quality of life.
Results: NC patients (51 males, mean age 37 ± 11.5 years) had educational and occupational levels similar
to those of the Italian population of the same age range, but married less often, especially if NC onset
occurred at a young age. Total annual NC-related costs were €9814 ± 10,372 per patient. Multivariate
analyses showed that patients with NC onset before the age of 30 years had a higher educational level,
married less frequently, and were less frequently unemployed or inactive (retired, housewife). Patients
diagnosed before the age of 30 years were less frequently unemployed or inactive, had fewer work
changes, and had a better general health perception. Irresistible sleepiness was associated with work
absences and higher indirect costs. Depressive symptoms were strongly associated with lower qualityof-
life scores.
Conclusions: NC age at onset and at diagnosis modulates the disease-related burden. A diagnosis at a
young age could improve patients’ occupational prognosis, and their general health perception.