Abstract
BackgroundPaediatric 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.MethodsTime-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".Results405 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.ConclusionsGPs, Child Psychiatrists and Paediatricians need more knowledge about CFS/ME and the appropriate referral pathways to ensure timeliness in referral to specialist services.
Highlights
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
Paediatric chronic fatigue syndrome, or myalgic encephalomyelitis/encephalopathy, (CFS/ME), is defined as “generalised fatigue persisting after routine tests and investigations have failed to identify an obvious underlying cause” [1]
Of the 388 children for whom school attendance was recorded, 125 (32%) children were defined as having severe CFS/ME, 146 (38%) as having moderate CFS/ME and 117 (30%) as having mild CFS/ME
Summary
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. In 2007, the National Institute of health and Clinical Excellence (NICE) recommended that children who were severely affected (housebound) with CFS/ME should be offered referral to specialist services immediately, those that were moderately affected (missing significant amounts of school) should be referred after 3 months of symptoms and those that had mild CFS/ME (attending full time school) should be offered referral after six months of symptoms [7] This advice is consistent with the Chief Medical Officer’s report [8], Royal College of Paediatrics and Child Health (RCPCH) guidelines [1] and the Department of Health exemplar for the management of CFS/ME [9]. This study used a mixed-methods approach to examine the factors associated with time taken to access specialist services and explore the issues experienced by parents prior to assessment in a specialist service
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