title: Health-related quality of life in patients with narcolepsy.
abstract: BACKGROUND
  To evaluate the health-related quality of life (HRQoL) in patients suffering from narcolepsy.
  
  
  METHODS
  Subjects included 75 narcoleptic patients diagnosed at the Hephata Klinik, Germany, who met the International Classification of Sleep Disorders (ICSD) criteria for narcolepsy. A standardized telephone interview was used to inquire about the disease and its burdens to the patients. HRQoL was recorded using the 36-item short-form Medical Outcomes Study (SF-36) as well as the Euroqol (EQ-5D). Frequency and factors of influence on decreased HRQoL were evaluated by using bivariate and multivariate analyses.
  
  
  RESULTS
  Patients with narcolepsy had considerably lower scores on all eight domains of the SF-36 compared to the general German population. In particular, scores were poor for the dimensions "physical role", "vitality", and "general health perception". Forty-eight percent of the patients reported problems in at least one of the EQ-5D items; most frequent were problems in the dimension "usual activity" (63.8%), "pain/discomfort" (61.7%) and "anxiety/depression" (41.1%). Difficulty maintaining "self-care" was documented only by 6.8%. The mean VAS score was 60.7%. Interestingly, signs and symptoms of narcolepsy, except for irresistible sleep episodes (p<0.03), had only a minor impact on HRQoL. Multivariate analyses confirmed a strong influence of employment status, living with a partner, excessive daytime sleepiness (EDS) and professional advancement.
  
  
  CONCLUSIONS
  HRQoL is considerably reduced in patients, with narcolepsy affecting the different dimensions to various degrees. Factors other than clinical signs and symptoms are associated also with poor HRQoL. Measures should be taken to integrate those factors into healthcare guidelines in order to improve the quality of life in patients with narcolepsy.
authors.affiliation: Department of Neurology, Philipps-University, Marburg, Germany. dodel@med.uni-marburg.de
authors.forename: Richard
authors.initials: R
authors.lastname: Dodel
authors.forename: Helga
authors.initials: H
authors.lastname: Peter
authors.forename: Annika
authors.initials: A
authors.lastname: Spottke
authors.forename: Carmen
authors.initials: C
authors.lastname: Noelker
authors.forename: Astrid
authors.initials: A
authors.lastname: Althaus
authors.forename: Uwe
authors.initials: U
authors.lastname: Siebert
authors.forename: Tobias
authors.initials: T
authors.lastname: Walbert
authors.forename: Karl
authors.initials: K
authors.lastname: Kesper
authors.forename: Heinrich F
authors.initials: HF
authors.lastname: Becker
authors.forename: Geert
authors.initials: G
authors.lastname: Mayer
mesh_terms: D000328:Adult; D003710:Demography; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D009290:Narcolepsy / Q000453:epidemiology / Q000503:physiopathology / Q000523:psychology*; D011788:Quality of Life / Q000523:psychology*; D012895:Sleep, REM / Q000502:physiology; D018709:Statistics, Nonparametric; D011795:Surveys and Questionnaires