Objective As part of a larger qualitative study to explore outcomes important in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) and what improvements in fatigue and disability are key, interviews were undertaken with adolescents and their parents. This paper focuses on their descriptions of fatigue, fluctuation of symptoms and payback.
Design and setting Semistructured qualitative interviews were undertaken between December 2014 and February 2015. Adolescents and parents were interviewed separately. Participants were recruited from a single specialist paediatric chronic fatigue service. Interviews were audio recorded, transcribed verbatim and analysed using thematic analysis.
Participants We interviewed 21 adolescents and their parents (20 mothers and 2 fathers). The adolescents were aged between 12 and 17 years of age (mean age 14.4 years), mild to moderately affected by CFS/ME (not housebound) and the majority were female (16/21).
Results All adolescents with CFS/ME reported fatigue, a natural fluctuation of the condition, with good days and bad days as well as an increase in symptoms after activity (payback). However, adolescent’s descriptions of fatigue, symptoms and the associated impact on their daily lives differed. The variations included: fatigue versus a collection of symptoms, constant versus variable symptoms and variable symptom severity. There were differences between participants in the amount of activity taken to cause payback. The impact of fatigue and symptoms on function ranged from: limiting the duration and amount of leisure activities, struggling with daily activities (eg, self-care) to no activity (sedentary).
Conclusions Fatigue, fluctuation of the condition and payback after activity are described by all adolescents with CFS/ME in this study. However, the individual experience in terms of how they describe it and the degree and impact varies.
- chronic fatigue syndrome
- adolescent health
- qualitative research
- patient perspective
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Contributors RMP, EC, AS and KLH designed the study. RMP, NA and DB collected the data. RMP and NA analysed the data. All authors contributed to the interpretation of results and to drafting this paper. All authors have read and approved the final version of the manuscript.
Funding This work was supported by a University of Bristol PhD Scholarship. EC is funded by the National Institute for Health Research (Senior Research Fellowship, SRF-2013- 06-013).
Disclaimer The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.
Competing interests EC was the medical advisor for the Association for Young people with ME (AYME) until 2017.
Patient consent Not required.
Ethics approval Full ethical approval was obtained from the NRES Committee North West (08/04/2014, ref 14/NW/0170). An amendment to use one-to-one interviews with adolescents, parents and clinicians who are unable to attend focus groups and to include exploration of important outcomes was approved (21/10/2014, ref 14/NW/0770). Relevant R&D approval was obtained from the RNHRD (20/06/2014, ref-RBB 427).
Provenance and peer review Not commissioned; externally peer reviewed.