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What matters to children with CFS/ME? A conceptual model as the first stage in developing a PROM
Roxanne Parslow1, Aarti Patel2, Lucy Beasant1
1Centre for Child and Adolescent Health, School of Social & Community Medicine, University of Bristol, Bristol, UK.
Insights
Children with chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) experience fluctuating symptoms impacting physical activity, social life, and emotional well-being. Understanding these factors is key to developing better patient-reported outcome measures for pediatric CFS/ME.
Area of Science:
- Pediatric Health
- Chronic Illness Research
- Patient-Reported Outcomes
Background:
- Pediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is a common and disabling condition.
- Current patient-reported outcome measures (PROMs) fail to capture outcomes crucial for children with CFS/ME, hindering research.
- A significant unmet need exists for PROMs that reflect the lived experiences of pediatric CFS/ME patients.
Purpose of the Study:
- To explore and identify the health outcomes and life aspects that are most important to children diagnosed with CFS/ME.
- To gather in-depth qualitative data directly from pediatric patients regarding their experiences with CFS/ME.
- To inform the development of a new, child-centered PROM for pediatric CFS/ME.
Main Methods:
- Qualitative study involving semi-structured interviews with 25 children (aged 8-17) with CFS/ME.
- Interviews were conducted with children, sometimes with parental presence, and a focus group with mothers.
- Thematic analysis using constant comparison techniques, supported by NVivo software, was employed to analyze transcribed data.
Main Results:
- Four primary themes emerged: fluctuating 'symptoms', reduced 'physical activity', limited 'social participation', and impacted 'emotional well-being'.
- These core domains were significantly influenced by both 'management' strategies and various 'contextual factors', which could be positive or negative.
- The interplay between healthcare services and the school environment was identified as a pivotal factor affecting children's experiences.
Conclusions:
- The findings provide a foundation for a conceptual model to develop a new, pediatric-specific PROM for CFS/ME.
- Healthcare providers must understand children's perspectives on CFS/ME to effectively manage the condition.
- Optimizing the relationship between healthcare and educational settings is crucial for mitigating the impact of CFS/ME on children's lives.
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.
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