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What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM
  1. Roxanne Parslow1,
  2. Aarti Patel2,
  3. Lucy Beasant1,
  4. Kirstie Haywood3,
  5. Debbie Johnson1,
  6. Esther Crawley1
  1. 1Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK
  2. 2Psychology Department, University of Bath, Bath, UK
  3. 3Royal College of Nursing Research Institute, Warwick Medical School, University of Warwick, Coventry, UK
  1. 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; esther.crawley{at}bristol.ac.uk

Abstract

Background 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.

Aim The aim of this study was to explore the aspects of life and health outcomes that matter to children with CFS/ME.

Methods 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.

Results 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.

Conclusions 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.

  • Chronic Fatigue Syndrome
  • Myalgic Encephalomyelitis
  • Patient Reported Outcome
  • children
  • qualitative

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