Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): a systematic review of patient-reported outcome measures (PROMs). — CFSMEATLAS
Assessing severity of illness and outcomes of treatment in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): a systematic review of patient-reported outcome measures (PROMs).
Haywood, K L, Collin, S M, Crawley, E · Child: care, health and development · 2014 · DOI
Quick Summary
This study looked at questionnaires that doctors use to measure how sick children with ME/CFS are and whether treatments help. The researchers found 13 different questionnaires being used, but none of them have been thoroughly tested to see if they actually work well for children with ME/CFS. The study shows we need better tools that are designed specifically for children with this condition and that actually measure what matters most to them.
Why It Matters
Children with ME/CFS lack validated, age-appropriate outcome measures that capture what matters most to them, hindering both clinical care and research. This review highlights critical gaps in PROM development and evaluation for pediatric ME/CFS, emphasizing the need for patient-centered tool development. Better measurement tools are essential for objectively tracking disease severity, evaluating treatments, and ensuring children's voices guide healthcare decisions.
Observed Findings
Thirteen PROMs with reliability and/or validity evidence were identified across 16 studies
Only five PROMs were developed specifically for children; eight were either generic or adult-derived
All 13 measures demonstrated limited evidence of measurement properties (reliability, validity, responsiveness)
No PROMs had documented evidence of practical properties such as acceptability or feasibility in pediatric ME/CFS populations
Significant methodological and quality issues were present in the evaluative studies themselves
Inferred Conclusions
Current PROMs for pediatric CFS/ME lack sufficient quality evidence to support clinical recommendations
There is a critical need for qualitative research involving children to identify patient-important outcomes
Future PROM development must be collaborative with children and rigorously evaluated against COSMIN standards
Systematic gaps exist in understanding which outcomes children with ME/CFS care about most
Remaining Questions
What specific health outcomes do children with ME/CFS and their families consider most important to measure?
What This Study Does Not Prove
This review does not identify which specific PROM is best for clinical use, as no measure met quality standards. It does not evaluate the effectiveness of any treatments, only the quality of outcome measurement tools. The study cannot recommend PROMs for clinical practice due to insufficient evidence of their reliability and appropriateness in pediatric ME/CFS populations.