title: What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME).
abstract: BACKGROUND
  Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and disabling with a mean time out of school of more than one academic year. NICE guidelines recommend referral to specialist services immediately if severely affected, within 3 months if moderately affected and within 6 months if mildly affected. However, the median time-to-assessment by a specialist service in the UK is 18 months. This study used a mixed-methods approach to examine factors associated with time taken to access specialist services.
  
  
  METHODS
  Time-to-assessment was analysed as a continuous "survival-time" variable in Cox regression models using data from self-completed assessment forms for children attending a regional specialist CFS/ME service between January 2006 and December 2009. Semi-structured interviews about barriers experienced in accessing healthcare for their child were conducted with nine parents of children aged < 17 years (8 individual and one parent couple). Interviews were digitally recorded and analysed using "thematic analysis".
  
  
  RESULTS
  405 children were assessed between 2006 and 2009 and information on school attendance was available on 388. Only 1/125 with severe CFS/ME and 49/263 (19%) with mild to moderate CFS/ME were seen within NICE recommended timeframe. Increased fatigue was associated with shorter time to assessment (HR = 1.15; 95% CI 1.03, 1.29 per unit increase in Chalder fatigue score; P = 0.01). Time-to-assessment was not associated with disability, mood, age or gender. Parents described difficulties accessing specialist services because of their own as well as their GP's and Paediatrician's lack of knowledge. They experienced negative attitudes and beliefs towards the child's condition when they consulted GPs, Paediatricians and Child Psychiatrists. Parents struggled to communicate an invisible illness that their child and not themselves were experiencing.
  
  
  CONCLUSIONS
  GPs, Child Psychiatrists and Paediatricians need more knowledge about CFS/ME and the appropriate referral pathways to ensure timeliness in referral to specialist services.
authors.affiliation: St George’s University of London, Cranmer Terrace, London, UK.
authors.forename: Carly M
authors.initials: CM
authors.lastname: Webb
authors.forename: Simon M
authors.initials: SM
authors.lastname: Collin
authors.forename: Toity
authors.initials: T
authors.lastname: Deave
authors.forename: Andrew
authors.initials: A
authors.lastname: Haig-Ferguson
authors.forename: Amy
authors.initials: A
authors.lastname: Spatz
authors.forename: Esther
authors.initials: E
authors.lastname: Crawley
mesh_terms: D000293:Adolescent; D001291:Attitude of Health Personnel; D002648:Child; D002662:Child Health Services / Q000458:organization & administration*; D002675:Child, Preschool; D002983:Clinical Competence; D015673:Fatigue Syndrome, Chronic / Q000175:diagnosis / Q000628:therapy*; D005260:Female; D006297:Health Services Accessibility; D006302:Health Services Research; D006801:Humans; D008297:Male; D010287:Parent-Child Relations; D011368:Professional-Family Relations; D036301:Qualitative Research; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D013997:Time Factors; D006113:United Kingdom
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