What stops children with a chronic illness accessing health care: a mixed methods study in children with CFS/ME, 2011, Webb, Crawley et al

Paper from 2011
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.

The Original Article was published on 11 November 2011

2023 Correction: What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME)

Correction to: BMC Health Services Research (2011) 11:308. https://doi.org/10.1186/1472-6963-11-308.

Following a report of a publications review jointly commissioned by the Health Research Authority and the University of Bristol, the authors would like to correct the following element of the ethics statement provided in the original article [1]:

Ethical permission for the qualitative part of the study was granted by the North Somerset and South Bristol Research Ethics Committee (REC Reference number 09/H0106/81). The study was also approved by the Research and Development department of the RNHRD. The North Somerset & South Bristol Research Ethics Committee decided that the collection and analysis of these data for service evaluation did not require ethical review by an NHS research ethics committee or approval from the NHS R&D Office (REC reference number 07/Q2006/48).

The original article [1] has been corrected.

https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-023-09485-6

 

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