Simon
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If you just look at the central purpose of this study, to help create a better questionnaire to measure outcomes for patients, I think it's pretty helpful.
The senior author, Kirstie Haywood, has published some great stuff, She wrote a damning systematic review of PROMs used to date in CFS/ME, and a similar one (with Esther Crawley) on children came to a similar conclusion and was the basis for creating a new one. The idea of consulting with both patients and clinicians on what matters is just the way it should be done. We desperately need to move on from scales like Chalder where Simon Wessely has boasted since there were no questionnaires he made up the the questions himself (no mention of asking patients what mattered).
It's important the patients continue to be involved, particularly in selecting the questions that make the final draft questionnaire (then comes the tedious but critical work of statistical validation).
I agree with comments about using actometers, and that's a critical way of validating the new questionnaire, as well as a good way to measure response bias in any cllinical trials (a modest effect, but essential to allow for this, as PACE's failure to do so shows). However, much can't be measures so easily eg fatigue, mental concentration problems and social activity and I like that this study seems to see the need to measure a wide range of outcomes to get meaningful measures of progress.
Some of the wider comments were a bit annoying, such as this gem:
But overall, I like this and hope it will lead to a robust, valid and useful outcome measure for children at some point.
This study aimed to understand the perspectives of specialist paediatric CFS/ME health professionals and identify outcomes that are clinically important....
CONCLUSIONS:
Clinically important outcomes in paediatric CFS/ME involve a range of aspects of health. Health professionals consider increases in physical function yet maintaining school functioning and participation more widely as important outcomes from treatment. The results are similar to those described by children in a recent study and will be combined to develop a new child-specific PROM that has strong clinical utility and patient relevance.
The senior author, Kirstie Haywood, has published some great stuff, She wrote a damning systematic review of PROMs used to date in CFS/ME, and a similar one (with Esther Crawley) on children came to a similar conclusion and was the basis for creating a new one. The idea of consulting with both patients and clinicians on what matters is just the way it should be done. We desperately need to move on from scales like Chalder where Simon Wessely has boasted since there were no questionnaires he made up the the questions himself (no mention of asking patients what mattered).
It's important the patients continue to be involved, particularly in selecting the questions that make the final draft questionnaire (then comes the tedious but critical work of statistical validation).
I agree with comments about using actometers, and that's a critical way of validating the new questionnaire, as well as a good way to measure response bias in any cllinical trials (a modest effect, but essential to allow for this, as PACE's failure to do so shows). However, much can't be measures so easily eg fatigue, mental concentration problems and social activity and I like that this study seems to see the need to measure a wide range of outcomes to get meaningful measures of progress.
Some of the wider comments were a bit annoying, such as this gem:
Which could be rewritten more usefully as 'making progress is a significant predictor of improved quality of life'. I'm not sure that adds anything to the paper.Goal attainment has been found to be significant predictor of quality of life improvement for people with CFS/ME [49]
But overall, I like this and hope it will lead to a robust, valid and useful outcome measure for children at some point.