title: How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study.
abstract: OBJECTIVE
  To test the association between self-rated health and self-rated degree of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and CFS/ME patients' assessment of quality of primary care, specialist care and coordination of care.
  
  
  METHODS
  Cross-sectional study.
  
  
  METHODS
  Self-reported questionnaire data from women members of The Norwegian ME Association obtained in 2013.
  
  
  METHODS
  431 women with CFS/ME aged 16-73 years.
  
  
  METHODS
  The participants' assessment of quality in primary care, specialist care and in coordination of care (good/very good or poor/very poor). Main explanatory variables: self-rated health and self-rated degree of CFS/ME.
  
  
  RESULTS
  Quality of care was rated poor by 60.6% in primary care, by 47.7% in specialist care, and by 71.2% regarding coordination of care. Poorer self-rated health increased the probability of rating quality in primary care poor, particularly among women 40 years and over (OR 2.38, 95% CI 1.63 to 3.49), women with university education (OR 2.57, CI 1.68 to 3.94), and owing to less frequent general practitioner (GP) visits (OR 2.46, CI 1.60 to 3.78). Poorer self-rated health increased the probability of rating quality poor in specialist care (OR 1.38, CI 1.05 to 1.82), but not in coordination of care. A more severe CFS/ME was associated with a higher probability of rating quality in primary care poor (OR 0.61, CI 0.38 to 0.93). Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor.
  
  
  CONCLUSIONS
  A large proportion of women with CFS/ME rated quality of care poor/very poor in primary care, specialist care and in coordination of care. The dissatisfaction was higher for primary care than for specialist care. Overall, poorer self-rated health and a more severe CFS/ME were associated with lower quality scores in primary and specialist care, but not in coordination of care. Healthcare services, as assessed by women with CFS/ME, do have a large potential for improvement.
authors.affiliation: Faculty of Health Sciences, Department of Community Medicine, UiT The Arctic University of Norway and Norwegian Centre for Integrated Care and Telemedicine, University Hospital of North Norway, Tromsø, Norway.
authors.forename: Anne Helen
authors.initials: AH
authors.lastname: Hansen
authors.affiliation: Faculty of Health Sciences, Department of Community Medicine, UiT The Arctic University of Norway, Tromsø, Norway.
authors.forename: Olaug S
authors.initials: OS
authors.lastname: Lian
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care / Q000458:organization & administration / Q000592:standards; D059026:Diagnostic Self Evaluation; D015673:Fatigue Syndrome, Chronic / Q000628:therapy*; D005260:Female; D006296:Health Services / Q000592:standards*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009664:Norway; D017060:Patient Satisfaction; D011320:Primary Health Care / Q000592:standards; D011787:Quality of Health Care / Q000458:organization & administration / Q000592:standards; D055815:Young Adult
keywords: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME); Coordination of care; General practice; Norway; Quality of care; Specialist care