Preprint Development and content validity of the Clinal Needs Assessment for Myalgic Encephalomyelitis (CNAME), 2025, Tyson, Fleming, Geraghty, Gladwell

Trish

Trish

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Development and content validity of the Clinal Needs Assessment for Myalgic Encephalomyelitis (CNAME)

Sarah F Tyson, Russell Fleming, Keith Geraghty, Peter Gladwell
doi: https://doi.org/10.1101/2025.10.27.25338891

Abstract​

Purpose: To co-produce the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) with patients and clinicians, and to assess its content validity.

Methods: Guided by the COSMIN guidelines, a draft CNAME was devised from relevant literature and lived experience. It was revised following piloting and cognitive interviews with the advisory groups and then completed online by people with ME. Content and face validity were assessed via deductive framework analysis of participant feedback. Construct validity (in terms of relevance, duplication and comprehensibility) were assessed using frequencies, cross-tabulations and response rates respectively. As the CNAME produces dichotomous (yes/no/not relevant) data which are not summated and are not intended for repeated use, further psychometric analyses are not possible or relevant.

Results. Four hundred people with ME participated. Comprehensibility was excellent (>97.5% item completion rate). There were no floor effects, but several items had a ceiling effect and were removed. Eight items demonstrated duplication and were combined. Participant feedback was positive, confirming that the CNAME addressed the issues that were important and relevant to them and was easy to complete.

Conclusions: The Clinical Needs Assessment for ME is a valid, feasible and acceptable measure of clinical needs in people with ME/CFS.

Competing Interest Statement​

None of the authors have any conflicts of interest, however Russell Fleming is employed by the UK ME Association, which funded the project.

Funding Statement​

This study was funded by the ME Association UK

Preprint | PDF
 
There were no floor effects, - really?

but several items had a ceiling effect and were removed. which were these and were they linked to severity ?

Eight items demonstrated duplication and were combined. Participant feedback was positive- quite a bit of pushback on MEA website , social media and here raising clear issues - how was this assessed?
confirming that the CNAME addressed the issues that were important and relevant to them and was easy to complete- easy to complete- that's moderate and severe ME probably kicked into the long grass again.

As the CNAME produces dichotomous (yes/no/not relevant) data which are not summated and are not intended for repeated use, further psychometric analyses are not possible or relevant. - how good is it for app development though? Will this data be shared with others?

This will be baked into delivery plan retaining existing clinics doing the same thing....
 
The questionnaire is available as supplementary material.

It's a list of tick boxes to enable the pwME to inform their ME/CFS service on their first visit about what help they need from the service. The 21 items are listed under 2 headings Understanding ME/CFS and Care and Support plan.

It seems fairly sensible mostly, apart from the usual stuff about goal setting, but it's all stuff that should be offered anyway.

They say it's just for a single use in a clinic to highlight the pwME's priorities of needs from the clinic, not to provide summary scores or to be used multiple times. Though there seems to be some hint in the article that it may be used for service evaluation.

It seems a lot to ask from a newly diagnosed patient to know what they need to prioritise from things that a clinic should provide anyway for everyone, much of it as leaflets about ME/CFS symptoms and management. It seems to imply the production of a care plan is a one-off thing.

I think it's designed for the current model of outpatient clinics that only see new patients for diagnosis and a course of therapist led sessions, then hand back to GP's.
 
I can see it being used by clinics to tick off as they provide information to the pwME for each of the boxes they have ticked, and then sign them off as completed 'treatment', and data about this used for service evaluation. Next step, it will all be put on an app with generic information and referral back to the GP.

Any decent service run by knowledgable doctors and specialist nurses will deal with each of the person's needs as they raise them, not as a one off tick box exercise.
 
My experience of seeing people for the first time with an illness is that they are only likely to want and be able to digest one or two central pieces of information. More detail comes with further visits. I am not sure why a person should know what they need, either. Much of what they are likely to need either has not occurred to them or is put to the back of the mind until they have some idea what is going on.

And building confidence between someone and a professional has a lot to do with these sorts of questions being asked face to face and stopping and pausing where it is relevant. If much of what professionals have to offer is moral support then that does not come from filling in forms. There is no way I would want to be confronted with an app.


I suspect this will do the equivalent of gathering dust in the bottom left hand draw of the desk.

Edit: what Trish said.
 
So demoralising
Its misguided at best, but actually no, given the intended use, it's inhumane.
I looked at the intended app. It was awful.
Even if it was further developed to be halfway decent I still would not want to experience such impersonal healthcare for such a life changing diagnosis as mine has been.

I fear relying on it will likely lead to increased disability as patients overexertion themselves into progression.

It makes me wonder how people with similar illnesses that lack treatments, but whose illnesses are accepted as biological get treated. Why must we always be treated as a stigmatised poor cousin.

How much worse can it get? :cry:
 
I do not understand the purpose of this.

It feels like an a la carte menu that the patients are supposed to order from. I imagine the secondary gains proponents will have a field day with this.

And how do they expect a GP to react if a patients brings this questionnaire to them?

It also ignores the fact that most HCP will provide inadequate or inappropriate solutions to these needs, and now they can even say that the patients asked for it!
 
I think it's significant that the team appointed to do this does not include any physicians. It is made up of 2 physios, a social scientist and a MEA employee who works closely with BACME.

It is all designed on the assumption of BACME style outpatient clinics working on a rehab model run by physios and OT's. Their aim seems to be to create paperwork to enable them to create more paperwork (a care plan) and to create tick boxes they can use to justify their continued existence. As Jonathan Edwards says, no doctor, either specialist or GP will waste their time with all this paper/app data.

One bizarre thing about the questionnaire design is that they left off the most commonly requested items from their initial round of testing on the grounds that everyone will/should be offered those things, but everything else on the list is either useless, like goal setting, or should be available to everyone too if needed.
 
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