Haywood, K L, Collin, S M, Crawley, E · Child: care, health and development · 2014 · DOI
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.
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.
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.
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 →
The first block is for the primary paper and is the citation you should use in research work. The atlas-snapshot line only applies if you are specifically referring to this atlas’s reading of the paper on the date shown.
Primary citation
Haywood, K L, Collin, S M, & Crawley, E (2014). 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).. Child: care, health and development. https://doi.org/10.1111/cch.12135
BibTeX
@article{mecfsatlas-haywood-2014-assessing-severity,
author = {Haywood, K L and Collin, S M and Crawley, E},
title = {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).},
journal = {Child: care, health and development},
year = {2014},
doi = {10.1111/cch.12135},
note = {PubMed: 24661148},
url = {https://www.mecfsatlas.com/evidence/haywood-2014-assessing-severity},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/haywood-2014-assessing-severity
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