Background: Aim Methods Parents were present in 19\u00a0interviews with their children. Three mothers participated in a focus\u00a0group. All the interviews and the focus group were audio-recorded and\u00a0transcribed. Data were analysed thematically using techniques of\u00a0constant comparison. NVivo was used to structure and categorise data\u00a0in a systematic way.<\/p>\n Results These domains were influenced by\u00a0both ‘management’ and ‘contextual factors’, which could be positive\u00a0 and negative. The relationship between healthcare and school was Conclusions What matters to children with CFS\/ME? A conceptual model as the first stage in developing a PROM<\/a>, by\u00a0Roxanne Parslow, Aarti Patel, Lucy Beasant, Kirstie Trial registration number ISRCTN81456207<\/p>\n","protected":false},"excerpt":{"rendered":" Research abstract: Background: Paediatric chronic fatigue syndrome (CFS)\/myalgic encephalomyelitis\u00a0(ME) is relatively common and disabling. Research is hampered because\u00a0current patient-reported outcome measures (PROMs) do not capture\u00a0outcomes that are important to children with CFS\/ME. Aim The aim of this study was to … Continue reading
\nPaediatric chronic fatigue syndrome (CFS)\/myalgic encephalomyelitis\u00a0(ME) is relatively common and disabling. Research is hampered because\u00a0current patient-reported outcome measures<\/a> (PROMs) do not capture\u00a0outcomes that are important to children with CFS\/ME.<\/p>\n
\nThe aim of this study was to explore the aspects of life and health\u00a0outcomes that matter to children with CFS\/ME.<\/p>\n
\nTwenty-five children with CFS\/ME were interviewed (11 males, 14\u00a0females; mean age 12.9 years (SD 2.2), range 8-17). Twelve were\u00a0trial participants interviewed during the trial and 13 were recruited\u00a0as part of a follow-up qualitative study.<\/p>\n
\nChildren identified four key themes (health outcome domains):\u00a0 ‘symptoms’ that fluctuated, which caused an unpredictable reduction in\u00a0both ‘physical activity’ and ‘social participation’ all of which\u00a0impacted on ’emotional well-being’.<\/p>\n
\nconsidered pivotal.<\/p>\n
\nChildren’s descriptions helped to inform a conceptual model that is\u00a0necessary to develop a new paediatric CFS\/ME PROM. Doctors need to be\u00a0aware of how children conceptualise CFS\/ME; the relationship between\u00a0healthcare and school is fundamental to ameliorate the impact of CFS\/ME.<\/p>\n
\nHaywood, Debbie Johnson, Esther Crawley\u00a0in\u00a0Archives of Disease in Childhood<\/em>, [Published Online\u00a0 9 October 2015]<\/p>\n