Developing and pretesting a new patient reported outcome measure for paediatric CFS/ME: cognitive interviews with children, 2019, Crawley et al

Developing and pretesting a new patient reported outcome measure for paediatric Chronic Fatigue Syndrome/ Myalgic Encephalopathy (CFS/ME): cognitive interviews with children

full paper
https://jpro.springeropen.com/articles/10.1186/s41687-019-0156-8

eta:

 

One conclusion of this study from an outside POV is that it took this paediatric "ME expert" at least 15 years of research to decide that patients and their carers should have some input into subjective measuring of outcomes in their illness.

With the caveat as we well know that even this would not be happening if not for the scrutiny of the shit pile of previous research using useless measurements designed to provide the researcher with quality 'see I'm so good and I knew I was right' kind of data.

Yes this post is rather umm, unflattering of our intrepid researcher.

Since it seems she will continue research output for this illness it will be interesting to see what kind of conclusions future research data will draw about the nature of paediatric ME and what treatments are useful.

 

There is not a single reason why such a measure should be developed with children. Especially given Crawley's lack of ethics, she should not even be allowed to work with minors anymore. As a pediatrician this is a bit of a pickle but she brought this on herself. Here the failure is on the regulators and oversight.

The very first sentence is like scraping a chalkboard with nails. There is indeed a lack of PROMs, because of hacks like Crawley peddling the ideological and self-contradictory nonsense of ME being a problem of perception, which has lead to systematically dismiss the substance of what we report. The end result is as likely to be a genuine PROM as recovery norge is a patient organization. Too much bias involved.

The questionnaire itself is not in the paper so it's impossible to judge anything. From the questions and the presence of a frequency response, it appears at least more competent than the CFQ. But there is still no reason why it should be developed with children rather than with adults. The consequences may be slightly different but the circumstances translate very easily. It's a valid eventual step, not a first.

The time to think about outcome measures was 30 years ago, way before promoting sham treatments as safe and effective without even having a competent definition and measurement of outcomes. No one who has been involved in the promotion of sham treatments should be involved in this subject matter. Regulators, get your damn affairs in order.

 

This is potentially useful research, the discussion of the concerns of the children illustrates this.

And so on...

But I think the relevance/understandability etc still needs to be replicated by outside research groups before the measure is considered relevant. 67 items still seems like too many questions, especially for children though... (questions are in the additional file)

 

I find this sad.
That research has been done for years with no patient informed context.

That so little has been appreciated re effects of this illness, as demonstrated by the many changes throughout the process.

Any clinician who listens to patients would have had a handle on most of the points ( eg being g at school and being capable of learning at school, doing things v doing things without payback etc) . This is basic to the condition.

That assumptions still inform parts ( my daughter is 18, not 8, and would struggle to recall 4 weeks ago)

That moderate/ severely affected seem to have been ignored again. Paediatrics has a very poor track record for this group.

Heartening to see progress like this.
Can't see the scale itself?
Is there a suggestion that this should be applied in conjunction with any objective measures , or is this too big a jump.

How does this compare with lenny Jason's s paediatric work?

 

Perhaps that this process had not been done before, and that simple aspects had not been appreciated explains the viewpoint informing the terms of engagement for NICE review for children and young people.
Not a clue .

 

To me, this whole PROM project looks hopelessly corrupted by the researchers involved. A waste of time and money imo.

This is of some interest given the SMILE trial's outcome switching, and the way verified school attendance was entirely dropped. @dave30th

The paper cites SMILE, and some other junk trials, but only to for the claim treatments often take months with CFS... and to boost their citation count?!

 

I haven't looked at references...bristol/ holland/ Denmark as a guess?
When will this narrative change?