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What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

By C. Webb, S. Collin, T. Deave, A. Haig-Ferguson, A. Statz and E. Crawley


Background\ud Paediatric 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. \ud Methods\ud 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 2007. 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”. \ud Results\ud 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 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.\ud Conclusions\ud GPs, Child Psychiatrists and paediatricians need more knowledge about CFS/ME and the appropriate referral pathways to ensure timeliness in referral to specialist services

Publisher: BioMed Central
Year: 2011
OAI identifier:

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  1. (2002). A report of the CFS/ME working group. A report to the chief medical officer of an independant working group. doi
  2. (2010). A: A qualitative exploration of adolescents' experiences of chronic fatigue syndrome. Clin Child Psychol Psychiatry doi
  3. Analysing qualitative data. doi
  4. (2011). CC: Missed opportunities for earlier treatment? A qualitative interview study with parents of children admitted to hospital with serious respiratory tract infections. Arch Dis Child doi
  5. (2005). Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge. Fam Pract
  6. (2010). Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adults: a qualitative study of perspectives from professional practice. BMC Fam Pract doi
  7. Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy); diagnosis and management. doi
  8. (1993). Development of a fatigue scale. doi
  9. (2008). E: Chronic fatigue syndrome in children aged 11 years old and younger. Arch Dis Child doi
  10. (2001). EP: Normative data for the HADS from a large non-clinical sample. doi
  11. (2003). Epidemiology of chronic fatigue syndrome and self reported myalgic encephalomyelitis in 5-15 year olds: cross sectional study. BMJ doi
  12. (2004). General practitioners' perceptions of chronic fatigue syndrome and beliefs about its management, compared with irritable bowel syndrome: qualitative study. BMJ doi
  13. (2004). Health. Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME), National Service Framework for Children. Young People and Maternity Services. doi
  14. (2007). Identity and coping experiences in Chronic Fatigue Syndrome: a synthesis of qualitative studies. Patient Educ Couns doi
  15. (2007). Incidence, prognosis, and risk factors for fatigue and chronic fatigue syndrome in adolescents: a prospective community study. Pediatrics doi
  16. (1993). IT: The Sf-36 Health Survey Questionnaire - An Outcome Measure Suitable for Routine Use Within the Nhs. doi
  17. (2009). JA: Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy. Arch Dis Child doi
  18. (2010). Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study. BMC Fam Pract doi
  19. (2009). Nacul L et al.: The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. BMC Public Health doi
  20. (2008). Obstructions for quality care experienced by patients with chronic fatigue syndrome (CFS)--a case study. Patient Educ Couns doi
  21. (1993). Qualitative content analysis: a guide to paths not taken. Qual Health Res doi
  22. (2009). Reeves WC: Barriers to healthcare utilization in fatiguing illness: a population-based study in Georgia. doi
  23. (2004). Royal College of Paediatrics and Child Health. Evidence Based Guideline for the Management of CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalopathy) in Children and Young People. doi
  24. (1997). Structure of anxiety symptoms among children: A confirmatory factor-analytic study. doi
  25. (2004). Thapar A: Prevalence of chronic disabling fatigue in children and adolescents. doi
  26. (2000). The course of severe chronic fatigue syndrome in childhood. doi

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