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

ObjectiveTo 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.MethodsOne 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.ResultsNC 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 quality-of-life scores.ConclusionsNC 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.