Research abstract:

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.

What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM, by Roxanne Parslow, Aarti Patel, Lucy Beasant, Kirstie
Haywood, Debbie Johnson, Esther Crawley in Archives of Disease in Childhood, [Published Online  9 October 2015]

Trial registration number ISRCTN81456207

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