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What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM
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Parslow, Roxanne, Patel, Aarti, Beasant, Lucy, Haywood, Kirstie L., Johnson, Debbie and Crawley, Esther (2015) What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM. Archives of Disease in Childhood, 100 (12). pp. 1141-1147. doi:10.1136/archdischild-2015-308831 ISSN 0003-9888.
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Official URL: http://dx.doi.org/10.1136/archdischild-2015-308831
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.
Item Type: | Journal Article | ||||||
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Divisions: | Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Warwick Research in Nursing > Royal College of Nursing Research Institute (RCN) (- July 2017) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School |
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Journal or Publication Title: | Archives of Disease in Childhood | ||||||
Publisher: | BMJ | ||||||
ISSN: | 0003-9888 | ||||||
Official Date: | 2015 | ||||||
Dates: |
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Volume: | 100 | ||||||
Number: | 12 | ||||||
Page Range: | pp. 1141-1147 | ||||||
DOI: | 10.1136/archdischild-2015-308831 | ||||||
Status: | Peer Reviewed | ||||||
Publication Status: | Published | ||||||
Access rights to Published version: | Open Access (Creative Commons) |
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