Research 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.

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