From BMJ Open, 28 October 2015 (full text available).
Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is different in children compared to in adults: a study of UK and Dutch clinical cohorts
Simon M Collin(1), Roberto Nuevo(1), Elise M van de Putte(2), Sanne L Nijhof(2), Esther Crawley(1)
1) Centre for Child & Adolescent Health, School of Social and Community Medicine, University of Bristol, Bristol, UK
2) Department of Paediatrics, Wilhelmina Children’s Hospital, University Medical Centre, Utrecht, The Netherlands
Correspondence to Dr Esther Crawley; firstname.lastname@example.org
To investigate differences between young children, adolescents and adults with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
Comparison of clinical cohorts from 8 paediatric and 27 adult CFS/ME services in the UK and a paediatric randomised controlled trial from the Netherlands.
Outcome measures include: fatigue (the UK—Chalder Fatigue Scale); Disability (the UK—SF-36 physical function subscale; the Netherlands—CHQ-CF87); school attendance, pain, anxiety and depression (the UK—Hospital Anxiety & Depression Scale, Spence Children’s Anxiety Scale; the Netherlands—Spielberger State-Trait Anxiety Inventory for Children, Children’s Depression Inventory); symptoms; time-to-assessment; and body mass index.
We used multinomial regression to compare younger (aged <12 years) and older (aged 12–18 years) children with adults, and logistic regression to compare UK and Dutch adolescents. RESULTS Younger children had a more equal gender balance compared to adolescents and adults. Adults had more disability and fatigue, and had been ill for longer. Younger children were less likely to have cognitive symptoms (OR 0.18 (95% CI 0.13 to 0.25)) and more likely to present with a sore throat (OR 1.42 (1.07 to 1.90). Adolescents were more likely to have headaches (81.1%, OR 1.56 (1.36% to 1.80%)) and less likely to have tender lymph nodes, palpitations, dizziness, general malaise and pain, compared to adults. Adolescents were more likely to have comorbid depression (OR 1.51 (1.33 to 1.72)) and less likely to have anxiety (OR 0.46 (0.41 to 0.53)) compared to adults. CONCLUSIONS Paediatricians need to recognise that children with CFS/ME present differently from adults. Whether these differences reflect an underlying aetiopathology requires further investigation. Trial registration numbers FITNET trial registration numbers are ISRCTN59878666 and NCT00893438. This paper includes secondary (post-results) analysis of data from this trial, but are unrelated to trial outcomes. STRENGTHS AND LIMITATIONS OF THIS STUDY * This study benefited from large sample sizes, and data on chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) symptoms and comorbid mood disorders were collected in the same way from UK children and adults. * Adults and children were recruited from specialist CFS/ME services in the UK and the Netherlands, so the results may not be generalisable to other settings, such as primary care. * Fatigue, disability, pain and mood, were measured differently in the UK and the Netherlands, making it difficult to compare these characteristics directly.
From the Archives of Disease in Childhood, 9 October 2015. (Epublished before print, open access).
What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM
Roxanne Parslow(1), Aarti Patel(2), Lucy Beasant(1), Kirstie Haywood(3), Debbie Johnson(1), Esther Crawley(1)
1) Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK
2) Psychology Department, University of Bath, Bath, UK
3) Royal College of Nursing Research Institute, Warwick Medical School, University of Warwick, Coventry, UK
Correspondence to Dr Esther Crawley, Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Barley House, Oakfield Grove, Bristol BS8 2BN, UK; email@example.com
Paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is relatively common and disabling. Research is hampered because current patient-reported outcome measures (PROMs) do not capture outcomes that are important to children with CFS/ME.
The aim of this study was to explore the aspects of life and health outcomes that matter to children with CFS/ME.
Twenty-five children with CFS/ME were interviewed (11 males, 14 females; mean age 12.9 years (SD 2.2), range 8–17). Twelve were trial participants interviewed during the trial and 13 were recruited as part of a follow-up qualitative study. Parents were present in 19 interviews with their children. Three mothers participated in a focus group. All the interviews and the focus group were audio-recorded and transcribed. Data were analysed thematically using techniques of constant comparison. NVivo was used to structure and categorise data in a systematic way.
Children identified four key themes (health outcome domains): ‘symptoms’ that fluctuated, which caused an unpredictable reduction in both ‘physical activity’ and ‘social participation’ all of which impacted on ‘emotional well-being’. These domains were influenced by both ‘management’ and ‘contextual factors’, which could be positive and negative. The relationship between healthcare and school was considered pivotal.
Children’s descriptions helped to inform a conceptual model that is necessary to develop a new paediatric CFS/ME PROM. Doctors need to be aware of how children conceptualise CFS/ME; the relationship between healthcare and school is fundamental to ameliorate the impact of CFS/ME.
Trial registration number ISRCTN81456207.