Illness perception in functional neurological disorder: low illness coherence and personal control 2024 Joos et al

Abstract

Introduction
Illness perception refers to patients’ subjective representations and appraisals of somatic and mental symptoms. These are relevant for self-management and outcome. In clinical practice, patients with functional neurological disorder (FND) often encounter a fragmented biomedical attitude, which leaves them without clear concepts. In this context, illness perception is relevant.

Methods
Illness perception was assessed in FND patients and compared with samples of psychosomatic patients (PSM) as well as poststroke patients (STR). The three samples (FND, n=87; PSM, n=97 and STR, n=92) were almost all in inpatient treatment or rehabilitation. Illness perception was assessed with the revised German version of the Illness Perception Questionnaire (IPQ-R). For assessments of correlations, depressive symptoms were tested with the Patient Health Questionnaire-9, dissociative and functional neurological symptoms by the German adaption of the Dissociative Experiences Scale and biopsychosocial complexity by the INTERMED Self-Assessment questionnaire.

Results
Apart from the chronicity subscale, all dimensions of the IPQ-R differed between groups. FND patients perceived lower illness coherence and personal control than both other groups and attributed their illness more to chance than to behavioural risk factors. PSM patients had the strongest emotional representations. There were only few correlations with dissociative scores and biopsychosocial complexity.

Conclusion
Illness perception is an important issue in patients with FND with particular emphasis on low illness coherence and personal control. Missing associations with biopsychosocial complexity suggest that subjective illness perception is an important complementary but separate issue, which likely influences therapeutic alliance and self-management in FND. Future studies should assess its influences on outcome.

Open access, https://neurologyopen.bmj.com/content/6/1/e000648

 

I dread reading this, because I find this sort of thing pretty chilling

but am I correct in assuming from the abstract that the gist of this is that this lack of coherence terminology is like someone reporting a massive itch on their whole hand or pins and needles and someone looking at it and assuming it is psychological in cause based on no evidence?

What the BPS model would predict as outputs and how they react to different stimuli 'does not equal' what actually is happening in the patient (except this is termed as 'patient perceptions' for certain illnesses)

So the author has assumed that the issue isn't 'the model' - which I'm not sure has been shown to actually fit well for anything, in the way that people normally design a model, then use that to 'model out' ie predict what they would then see in x situation with y condition (like you'd eg model a different tax or pay model across the different earning groups) then effectively that becomes your 'hypothesis/null hypothesis'. Although of course this style of medicine doesn't use this norm.

But the author has assumed that when things don't look at they should based on their beliefs then the patient has an added problem: some sort of lack of insight and distorted perception because it must be that what they are reporting is 'wrong', kindly put as 'we'll help that with some re-education, poor things' ?

I think the term 'patient perceptions' is becoming a big issue in medicine. It is being used ambiguously even within the same documents or to convey a double-meaning to different audiences.

As far as I'm aware FND isn't a condition where we are talking about someone who thinks they walked absolutely fine and straight but to the outsider they had a wonky gait or are unaware their speech is slurring when it is? So what on earth basis is there to think they would be wildly lacking of insight on other stuff, just because the people from a certain background would like reality to be a certain way and it not matching?

 

We keep telling the patients that it's biopsychosocial but they keep thinking its piobysoscholial.
Why can't they just get on with doing what they're told?

 

[added - Sorry I could not resist:]


Well ‘piobysoscholial’ just about sums up the researchers’ thinking.

 

I've not read it.

On brief glance: Such odd language

"patients with functional neurological disorder (FND) often encounter a fragmented biomedical attitude,"

Is that of the patients or of the medical system?

The later seems spot on in terms of patients experiences with psychobabble explanations for their difficulties. Fragmented thinking seems polite.

I suspect the paper suggests the former. As in: it's up to the patients to address their wonky fragmented attitudes. As in, please go away and stop mythering me and my medical colleagues and go see the nice psychologist down the corridor. (Who are also busy with many things they can help with and have not much to offer from an explaination or curative perspective beyond adjustment to grim situation that the patient is in...).

But gives the impression someone is doing something.

Impression management....

 

"Illness perception is an important issue in patients with FND...."

Why so special in FND?

Illness perception is an important issue. Full stop.

If your illness is classified as functional, psychosomatic, medically unexplained, somatic symptom disorder etc it matters muchlie the context. Because it matters how families, society, friends, other healthcare professionals view the patient. Patients lives literally depend on this.

Gotta wonder how hard it can be to simply and honestly state: We don't know. Simples.

 

I got curious about what they even mean by "illness coherence" and a quick Google suggests this is mostly a made-up concept from the functional school of neurology, not many hits, but they define it as:

Which is a pretty obvious and expected. The experts don't understand any of it either, it's literally defined as "without a known cause", and when they try to come up with some kludged up explanations they're incoherent. And since the beliefs-based model is that it's psychological but it obviously makes no sense to the patient, that somehow confirms the coherence, even though it's the freaking professionals who are themselves incoherent.

And why would patients attribute their illness to behavioral risk factors? That would be... drum roll... incoherent. So do they want incoherence, or not?! And I'm sorry but this is exactly the medical equivalent of "what were you wearing and don't you think it gave him the wrong idea? that maybe you are a little to blame here?"

Might as well argue that people who were assaulted by an unknown assaillant were probably not actually assaulted because they don't know who assaulted them. Which is entirely circular. They love circular arguments so much in that echo chamber than you can tell that the it's a perfectly squared circle.

And for people who go on and on about how we have illness beliefs, these people sure do have a lot of beliefs of their own and an incoherent obsession with the patients' beliefs even when they have none, pushing a specific attribution even though it makes basically zero sense.

MDs pushing psychosomatic ideology do very poorly when they go into psychological explanations, but they do even worse when they try to philosophize. They simply have no relevant skills for it and it shows.

 

Agree that "illness perception" is hugely important when referring to what medicine thinks an illness is. The research should be trying to understand why medicine can't recognise its knowledge gaps. Unfortunately, here it's —

"Illness perception refers to patients’ subjective representations and appraisals of somatic and mental symptoms."

 

It’s all just pre-amble terms they invent to claim there is a need for another one of medicines little paternalist stories to get the psych patients to take their pills (changes your brain chemistry story)


Turns out there are loads they admitted inventing either coming from someone marketing a drug or doctors wanting a nice tale to explain why x is the right approach to the poor thick plebs.

‘they just want something to bring it all together and make sense for them… but they couldn’t understand science and the facts and where we aren’t sure but if it’

so we get ‘CBT helps people to cope’ even to GOPs instead of ; comes in specific flavours each of which are supposed to be matched to the underlying issue and have therefore a model based on that eg exposure therapy for phobias.

v frustrated as I know there are loads of these stories I just can’t make right now!