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
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.
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.
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.
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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