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

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.

Internet-Based Therapy for Adolescents With Chronic Fatigue Syndrome: Long-term Follow-up

“…34 Previous literature has shown that delays in diagnosis of CFS and absenteeism because of CFS in adolescents are unfortunately (still) substantial. 10,35 FITNET treatment supported quick improvement of school attendance and thereby contributed to diminishing these detrimental effects of school absence during this critical time.…”

Chronic Fatigue Syndrome at Age 16 Years

“…This finding is particularly true for children from disadvantaged backgrounds because families that experience early family adversity may be less likely to overcome barriers to accessing specialist care. 15 …”

“…8,9,11 Although clinician-verified CFS seems to be less prevalent (0.1%-0.5%), [12][13][14] this discrepancy is almost certainly a consequence of referral pathways and barriers to accessing clinical services. 15 Recognition of CFS as a relatively common, highly debilitating, and potentially longterm pediatric disease has grown in recent years, 16,17 but it is important that the uncertainties regarding the population prevalence of pediatric CFS are resolved.…”

A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis

“…We are unaware that this has been described previously. Historically, CFS/ME has been an illness surrounded by controversy and adolescents with CFS/ME experienced disbelief from others and feared judgement regarding their illness (Jelbert et al, 2010; Webb et al, 2011) The diagnosis can be stigmatising partly due to the poor understanding of the aetiology (Asbring & Narvanen, 2002), and families may develop strategies to protect themselves from judgement, blame or disbelief and to portray the severity of CFS/ME (Guise, Widdicombe, & McKinlay, 2007). Alternatively, comparisons to pre-CFS/ME may be triggered by a grief process, whereby families reflect on how simple and enjoyable eating used to be.…”