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Complexity, context and considerations for treatment in CFS/ME: children’s versus health professional’s conceptual model

Background

Paediatric CFS/ME is relatively common and disabling. However, little is known about which outcomes are important to children and the clinicians who treat them.

Methods

We conducted semi structured interviews with young people with CFS/ME. Paediatric CFS/ME clinicians participated in focus groups or semi-structured interviews. Data was analysed thematically, descriptive accounts produced, and theoretical explanations developed.

Results

Thirty young people with CFS/ME were interviewed (15 males, 15 females); mean age 13.2 years (SD 2.3), and 15 clinicians from a range of clinical disciplines and experience in paediatric CFS/ME (2 months to 25 years) of which 10 (67%) were female.

Both young people and clinicians identified similar key outcomes: symptoms, activity, social participation and emotional wellbeing influenced by management and contextual factors. Disrupted school attendance was the impact described most often by young people. Clinicians said that changing sleep was fundamental for improvement. Clinicians described problems with using school attendance as an outcome measure as it is often reduced during treatment and did not necessarily reflect a child's disability or whether they were coping. Young people described a unidirectional relationship of anxiety, low mood and stress as a consequence of their symptoms and the reduction in usual activities, socialising and ability to keep up with school. Clinicians revealed the circularity of low mood with children becoming more vigilant to symptoms and lower thresholds for activity and participation driving further low mood.

Discussion

Analysis supported the development of separate conceptual models of CFS/ME described by young people and clinicians. Both the young person and health professional’s perspective is important for understanding the impact of this complex disabling illness.

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Correspondence to Roxanne Potgieter.

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This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

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Potgieter, R., Patel, A., Beasant, L. et al. Complexity, context and considerations for treatment in CFS/ME: children’s versus health professional’s conceptual model. Trials 16, P21 (2015). https://doi.org/10.1186/1745-6215-16-S1-P21

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  • DOI: https://doi.org/10.1186/1745-6215-16-S1-P21

Keywords

  • Focus Group
  • Young People
  • Health Professional
  • Conceptual Model
  • Semi Structure Interview