title: Narcolepsy in New Zealand: pathway to diagnosis and effect on quality of life.
abstract: OBJECTIVE
  There has been no attempt to survey New Zealanders with narcolepsy to determine their pathway to diagnosis, symptoms, treatment, or quality of life. We therefore aimed to develop a comprehensive questionnaire, and compare responses on measures of daytime sleepiness and quality of life between individuals with narcolepsy and the general New Zealand population.
  
  
  METHODS
  A questionnaire was developed encompassing descriptive information, daytime sleepiness and sleep habits, general health and wellbeing, diagnosis and treatment of narcolepsy, symptoms, and quality of life. Ninety-two individuals were identified through medical specialists and a local support group.
  
  
  RESULTS
  Complete responses were obtained from 54 individuals (63% female, mean age 54.7 ± 18.3 years). The mean Epworth Sleepiness Scale score was 16.4 ± 5.4 (/24). Symptoms first appeared at 20.7 ± 9.7 years of age on average, although diagnosis did not take place until 33.4 ± 13.8 years of age. Individuals with narcolepsy reported substantially lower health-related quality of life than the general New Zealand population. Less than half of those diagnosed with narcolepsy had undergone an objective evaluation including a sleep study.
  
  
  CONCLUSIONS
  New Zealanders with narcolepsy suffer from an excessive level of daytime sleepiness, and have significantly poorer health-related quality of life than the general population. There are a number of inconsistencies between the diagnostic pathway in New Zealand and best-practice guidelines for diagnosis and treatment.
authors.affiliation: WellSleep Sleep Investigation Centre, Department of Medicine, University of Otago, Wellington, New Zealand.
authors.forename: Angela J
authors.initials: AJ
authors.lastname: Campbell
authors.forename: T Leigh
authors.initials: TL
authors.lastname: Signal
authors.forename: Karyn M
authors.initials: KM
authors.lastname: O'Keeffe
authors.forename: Jessie P
authors.initials: JP
authors.lastname: Bakker
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000697:Central Nervous System Stimulants / Q000627:therapeutic use; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009290:Narcolepsy / Q000175:diagnosis* / Q000188:drug therapy / Q000523:psychology*; D009520:New Zealand; D017286:Polysomnography / Q000706:statistics & numerical data; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D000697:Central Nervous System Stimulants