title: The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS).
abstract: BACKGROUND
  Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common, severe condition affecting 0.2 to 0.4 per cent of the population. Even so, no recent international EQ-5D based health-related quality of life (HRQoL) estimates exist for ME/CFS patients. The main purpose of this study was to estimate HRQoL scores using the EQ-5D-3L with Danish time trade-off tariffs. Secondary, the aims were to explore whether the results are not influenced by other conditions using regression, to compare the estimates to 20 other conditions and finally to present ME/CFS patient characteristics for use in clinical practice.
  
  
  METHODS
  All members of the Danish ME/CFS Patient Association in 2013 (n=319) were asked to fill out a questionnaire including the EQ-5D-3L. From these, 105 ME/CFS patients were identified and gave valid responses. Unadjusted EQ-5D-3L means were calculated and compared to the population mean as well as to the mean of 20 other conditions. Furthermore, adjusted estimates were calculated using ordinary least squares (OLS) regression, adjusting for gender, age, education, and co-morbidity of 18 self-reported conditions. Data from the North Denmark Health Profile 2010 was used as population reference in the regression analysis (n=23,392).
  
  
  RESULTS
  The unadjusted EQ-5D-3L mean of ME/CFS was 0.47 [0.41-0.53] compared to a population mean of 0.85 [0.84-0.86]. The OLS regression estimated a disutility of -0.29 [-0.21;-0.34] for ME/CFS patients in this study. The characteristics of ME/CFS patients are different from the population with respect to gender, relationship, employment etc.
  
  
  CONCLUSIONS
  The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. However, further studies are needed to exclude the possible selection bias of the current study.
authors.affiliation: Danish Center for Healthcare Improvements, Aalborg University, Aalborg, Denmark.
authors.forename: Michael
authors.initials: M
authors.lastname: Falk Hvidberg
authors.affiliation: Coordinating Research-unit, Frederiksberg Hospital, Frederiksberg, Denmark.
authors.forename: Louise Schouborg
authors.initials: LS
authors.lastname: Brinth
authors.affiliation: Danish Center for Healthcare Improvements, Aalborg University, Aalborg, Denmark.
authors.forename: Anne V
authors.initials: AV
authors.lastname: Olesen
authors.affiliation: Danish Center for Healthcare Improvements, Aalborg University, Aalborg, Denmark.
authors.forename: Karin D
authors.initials: KD
authors.lastname: Petersen
authors.affiliation: Danish Center for Healthcare Improvements, Aalborg University, Aalborg, Denmark.
authors.forename: Lars
authors.initials: L
authors.lastname: Ehlers
mesh_terms: D000328:Adult; D017677:Age Distribution; D000368:Aged; D002908:Chronic Disease; D015897:Comorbidity; D003718:Denmark; D004522:Educational Status; D004651:Employment; D015673:Fatigue Syndrome, Chronic / Q000523:psychology*; D005260:Female; D006801:Humans; D008297:Male; D017533:Marital Status; D008875:Middle Aged; D011788:Quality of Life; D057566:Self Report; D012720:Severity of Illness Index; D017678:Sex Distribution