Enhancing the communication of functional neurological disorder diagnosis: A multi‐disciplinary education session, 2020, Edwards et al

Andy

Andy

Retired committee member
Background

Functional neurological disorder (FND) is a common diagnosis within Neurology. Effective communication of the diagnosis is known to be an important part of treatment and can result in reduction or cessation of symptoms, as well as decreased healthcare utilisation. A single group education session, facilitated by professionals commonly involved in the care of patients with FND, was developed to further enhance patients’ and relatives’ understanding and acceptance of diagnosis.

Methods
Patients and relatives attending a single education session were asked to complete self‐report ratings of understanding of diagnosis, acceptance of diagnosis, belief in treatability, and hopefulness regarding recovery, at the beginning and end of the session. Satisfaction data was also collected.

Results
Data was obtained from 193 patients and 153 relatives. Patients had experienced a median duration of symptoms of 4 years, and more than 80% of patients reported more than one functional neurological symptom. There were significant increases in terms of understanding, acceptance, belief in treatability and hopefulness for patients and relatives. Effect sizes ranged from large for improved understanding of FND to small‐to‐medium for increased agreement with FND diagnosis. High levels of satisfaction were also reported.

Conclusions
A multi‐disciplinary single group education session is an effective and acceptable method of increasing understanding and acceptance of an FND diagnosis, even for patients with a long‐duration of symptoms and high symptom burden. It could help improve readiness for further treatment.
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Paywall, https://onlinelibrary.wiley.com/doi/abs/10.1111/ene.14525?af=R
Sci hub (PDF), https://sci-hub.tw/10.1111/ene.14525
 
So much about human neurology is yet to be known.

Real neurologists don't take this as a sign to fob people off with their superstitious MUSings.

The European Journal of Neurology has been suffering a downward trend in their impact:

https://academic-accelerator.com/Impact-Factor-IF/European-Journal-of-Neurology

This type of paper will not help them improve that. I'm hoping more people will see through this charade.
 
Effective communication of the diagnosis is known to be an important part of treatment and can result in reduction or cessation of symptoms
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Beyond parody. As in this is significantly more absurd and laughable than homeopathic A&E. This is complete woo woo and the people peddling this quackery deserve to have their medical license taken away and their entire career re-evaluated as suspicious.

I would suggest without hesitation that more than half of all alternative medicine practitioners are more professional and less gullible than this. This stuff here is on the level of MLM sales scripts and training. Hell, there are boiler rooms for financial pump and dump schemes run by people with better ethics than this.

It's insane to think you can "effectively communicate" actual gaslighting. It's not a thing. It's also not a thing to build trust with people when you blatantly lie to their face. This here is far more Bernays than Freud. Bernays invented the modern marketing industry, applying Freud's ideas to their only effective use: lying and manipulating people into believing the lies. You can sell cars with this and you can sell fake medicine with this.

It's beyond necessary to make it forbidden for medical professionals to lie, mislead or withhold information under any circumstances. The truth, the whole truth and nothing but the truth. There may be the odd legitimate cases where it's warranted but the abuse is completely out of control. People will be pissed at this but all you had to do is do actual oversight to prevent abuses, instead you amplified and enable this massive widespread abuse.
 
It’s curious that the paper, talk, ‘session’ or whatever it is uses the bablespeak of Modern Languages Association and social justice. All vague, meaningless language meant to signify group membership and agreement within the cult, err, clique.
 
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It was registered as a service evaluation with the relevant NHS Trust, therefore ethical approval was not needed.
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This was a completely new offering and involved providing presenters with access to patients' personal medical information. (Quite aside from the fact that the researchers were aiming to convince vulnerable patients and their families of ideas that are possibly not supported by evidence - with likely consequences of patients feeling as though they are moral failures when they don't improve and families withdrawing support, worried that they are facilitating the illness).

I know of other researchers who have had to go through extensive ethical approval processes for much less. I think there is something seriously wrong with rules around ethical approval as applied to the UK NHS. @dave30th
 
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Problem 1: self-selection of patients and relatives in the decision to attend a session.

Problem 2: selection of patients and relatives in providing feedback
Pre- and post-FND Education Session data was available for 163 (84.5%) FND patients and 115 (75.7%) relatives.
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This 'training' was done as a 1 hour and 45 minute single session, in groups of about 30. The assessments were done at the beginning and end of the sessions. How hard would it be to ensure that essentially everyone was providing the before and after assessments? Not that hard I think. So why was there missing data? It seems unlikely that those people who did not provide feedback had similar views as those who did.

Across all response domains, both the degree of change (after controlling for relevant baseline score) from pre-to-post-session and the post-session scores were significantly greater for relatives compared with patients
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That sentence signals a whole lot of misery caused by these sessions. Relatives (the people probably most likely to be interested in providing support to the patients) were more likely to drink the Kool-aid and believe the ideas being promoted than patients.

There are no details given on what ideas are being promoted. This is the description of the session:

The first part was led by the neurologist, who covered assessment and diagnosis of functional neurological symptoms, the main types of FND presentations, and the various labels for FND. The second part was led by the neuropsychiatrist who spoke about aetiological aspects including common predisposing, precipitating, and perpetuating factors; and gave an overview of what to expect from neuropsychiatric assessment and treatment.

The clinical psychologist introduced what psychological treatment may look like, using cognitive- behavioural therapy as an example; and discussed two fictional case examples. Following this, the neuro-physiotherapist discussed how specialist physiotherapy can help to improve physical function and reduce disability. An ex-patient then discussed their experiences of receiving a FND diagnosis, and their experiences of treatment. The audience were directed to relevant self-help resources including websites containing further information regarding FND, and patient-led organisations.
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The first part was led by the neurologist, who covered assessment and diagnosis of functional neurological symptoms, the main types of FND presentations, and the various labels for FND. The second part was led by the neuropsychiatrist who spoke about aetiological aspects including common predisposing, precipitating, and perpetuating factors; and gave an overview of what to expect from neuropsychiatric assessment and treatment.

The clinical psychologist introduced what psychological treatment may look like, using cognitive- behavioural therapy as an example; and discussed two fictional case examples. Following this, the neuro-physiotherapist discussed how specialist physiotherapy can help to improve physical function and reduce disability. An ex-patient then discussed their experiences of receiving a FND diagnosis, and their experiences of treatment. The audience were directed to relevant self-help resources including websites containing further information regarding FND, and patient-led organisations.
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Note that Jon Stone recently published a study that found that promotion of a (psychiatrist-written) education/self-help website had no efficacy for patients.
https://www.s4me.info/threads/inter...ogical-disorder-shift-2020-stone-et-al.16006/
(ironically, that website was probably based on Jon Stone's own website!)

Of course this study doesn't provide any evidence of impact - for that would require longitudinal objective measures of impact on functioning (questionnaires are too easy biased in studies like this).
 
Hutan said:
The assessments were done at the beginning and end of the sessions
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When still working I did a lot of evaluation of training sessions for disabled clients and for carers, both professional and lay, including mixed groups of clients and carers, looking variously at attitudes to communication disability, imparting specific information and developing specific skills. This included training provided by professionals, by other carers and by service users, in both health and social services settings.

The least useful evaluation tool was subjective questionnaires administered immediately after training sessions. I found that something had to go very wrong with a session not to get almost universally positive responses. Such an approach invariably provided a glowing endorsement but no constructive or meaningful information. It was only when people had time to step back from the euphoria of a session is it that you began to get ‘critical‘ and more balanced responses. Even on repeats of identical questionnaires people responded very differently several weeks, a month or more later.

We continued to use such questionnaires to ensure we got nothing desperately wrong, but not to meaningfully evaluate sessions‘ efficacy or to help in the development of subsequent training.

[added - particularly with satisfaction ratings any reasonably competent leaders would invariably see close to maximum scores with questionnaires filled in immediately after a session.]
 
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Have only read the abstract - and that's all the energy I'm prepared to give this - but to me it sounds like they only tested the how well the participants understood the presenter's views before and after an education session? And just assumed that if only participants understood the presenter's ideas better they'd also get better? Dear oh dear.
 
Note the certainty of the language:

Functional neurological disorder (FND) is a common diagnosis within Neurology. Effective communication of the diagnosis is known to be an important part of treatment and can result in reduction or cessation of symptoms, as well as decreased healthcare utilisation.​

They are trying to keep the focus off the lack of substance behind the FND concept by portraying it as a given.

They have skipped the proof stage and gone straight to the marketing.
 
Sean said:
They have skipped the proof stage and gone straight to the marketing
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Literally. Let's be blunt here: this is a sales pitch. No different than a sales pitch for time shares or a MLM business, it even follows the sames methods, the same sales approach, selling a mindset, a solution, not a "product". This has no place whatsoever in medicine and reflects serious failure of oversight and accountability that this would even be allowed to happen, let alone actually take place.

A relevant "diagnosis" does not have to be sold. The very idea is so absurd as to be unimaginable, hence why there isn't any rule against it. But there should be. For every absurd written rule out there, there is a reason, some jackass abused something just because it wasn't explicitly forbidden. So let's definitely make this a rule, apparently too many jackasses have actually abused this flaw and now it has to be written down because psychosomatic ideologues can't stop themselves from cheating.
 
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