title: Health, social, and economic consequences of narcolepsy: a controlled national study evaluating the societal effect on patients and their partners.
abstract: OBJECTIVE
  Despite the fact that narcolepsy is a chronic disorder affecting younger people, there is insufficient information about its societal burden, time course, and familiar effect. We aimed to estimate the factual direct and indirect costs of narcolepsy patients and their families in a national sample using a controlled study design.
  
  
  METHODS
  Using records from the Danish National Patient Registry (1997-2009), all 816 narcolepsy patients and their partners were identified and compared with 3254 randomly chosen controls matched for age, gender, geographic area, and civil status. Direct and indirect costs, including frequencies of primary and secondary sector contacts' and procedures, medication, labor supply, and social transfer payments were extracted from the national databases.
  
  
  RESULTS
  Fewer patients (46.7%) than controls (51.4%) were married or cohabiting. Patients with narcolepsy had significantly higher rates of health-related contact, medication use, and a higher socioeconomic cost. Furthermore, they had lower employment rates, and those in employment had a lower income level than control subjects. Partners presented higher public health insurance and public transfers and lower income from employment. In all, the annual mean excess health-related cost, including social transfers, was €9572 for patients with narcolepsy and €3606 for their partners (both p<0.001). Patient consequences could be identified up to 11 years before first diagnosis and became more pronounced as the disease advanced.
  
  
  CONCLUSIONS
  Narcolepsy causes socioeconomic consequences, not only for patients, but also for their partners, which is present years prior to disease diagnosis, confirming a diagnostic delay.
authors: Danish Center for Sleep Medicine, Department of Clinical Neurophysiology, Center for Healthy Aging, University of Copenhagen, Glostrup Hospital, Copenhagen, Denmark. poul.jennum@regionh.dk
authors: Poul
authors: P
authors: Jennum
authors: Rikke
authors: R
authors: Ibsen
authors: Eva Rosa
authors: ER
authors: Petersen
authors: Stine
authors: S
authors: Knudsen
authors: Jakob
authors: J
authors: Kjellberg
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002908:Chronic Disease; D017281:Cost of Illness; D003718:Denmark / Q000453:epidemiology; D004651:Employment / Q000191:economics / Q000706:statistics & numerical data; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009290:Narcolepsy / Q000191:economics* / Q000453:epidemiology*; D012042:Registries / Q000706:statistics & numerical data*; D012919:Social Behavior; D012943:Social Security / Q000191:economics / Q000706:statistics & numerical data; D012959:Socioeconomic Factors; D018454:Spouses / Q000706:statistics & numerical data; D055815:Young Adult