PT - JOURNAL ARTICLE AU - Parslow, Roxanne AU - Patel, Aarti AU - Beasant, Lucy AU - Haywood, Kirstie AU - Johnson, Debbie AU - Crawley, Esther TI - What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM AID - 10.1136/archdischild-2015-308831 DP - 2015 Dec 01 TA - Archives of Disease in Childhood PG - 1141--1147 VI - 100 IP - 12 4099 - http://adc.bmj.com/content/100/12/1141.short 4100 - http://adc.bmj.com/content/100/12/1141.full SO - Arch Dis Child2015 Dec 01; 100 AB - 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.