E3 PreliminaryModerate confidencePEM not requiredMethods-PaperPeer-reviewedReviewed
Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking.
Parslow, Roxanne M, Anderson, Nina, Byrne, Danielle et al. · Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2020 · DOI
Quick Summary
Researchers asked young people with ME/CFS and their parents what aspects of their health and daily life matter most to them. Using a card-ranking game, 21 young people (ages 12-17) and their parents identified and discussed the outcomes that would be most important to improve. The study found that symptoms, tiredness, 'payback' (crashing after activity), and hobbies were ranked as most important by both groups, though young people prioritized school more and parents worried more about mood.
Why It Matters
This study ensures that new outcome measures for paediatric ME/CFS reflect what young people actually experience as most important, rather than only what clinicians assume matters. Patient-centered outcome measures are essential for capturing treatment effectiveness in ways meaningful to patients and for guiding research priorities in a poorly-understood, disabling condition affecting children at critical developmental stages.
Observed Findings
- Young people and parents ranked 'symptoms,' 'tiredness,' 'payback and crashing,' and 'activities and hobbies' as the most important outcomes to improve.
- Adolescents ranked 'school' as significantly more important than parents did.
- Parents ranked 'mood' as more important than their children did.
- The interactive card-ranking exercise was feasible and well-received by adolescents aged 12-17.
- Final framework contained 4 domains: sleep and tiredness, daily activities and school, leisure and social life, and mood and self-esteem.
Inferred Conclusions
- A youth-specific, participatory approach to outcome measure development can successfully identify priority domains that differ between young people and parents.
- An interactive card-ranking exercise is an effective engagement tool for eliciting patient priorities in paediatric ME/CFS.
- The resulting 4-domain, 11-subdomain conceptual framework should now be used to develop and validate a new paediatric CFS/ME patient-reported outcome measure.
Remaining Questions
- Does the conceptual framework demonstrate adequate validity, reliability, and responsiveness when operationalized as a full PROM?
- How do priority outcomes differ in children with severe ME/CFS compared to the mild-moderate cases studied?
What This Study Does Not Prove
This study does not test whether the conceptual framework is valid, reliable, or responsive to change—those would be evaluated in measurement property studies of the resulting patient-reported outcome measure (PROM). The findings apply only to mild-moderate CFS/ME in adolescents aged 12-17 and cannot be generalized to children outside this age range, more severe disease, or other populations without further research.
Tags
Symptom:Post-Exertional MalaiseCognitive DysfunctionUnrefreshing SleepFatiguePain
Phenotype:Pediatric
Method Flag:PEM Not DefinedWeak Case DefinitionSmall SampleExploratory OnlyNo Controls
Metadata
- DOI
- 10.1007/s11136-019-02399-z
- PMID
- 31907870
- Review status
- Editor reviewed
- Evidence level
- Early hypothesis, preprint, editorial, or weak support
- Last updated
- 12 April 2026
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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