Interventions that manipulate how patients report symptoms as a separate form of bias

[DigitalDrifter]

Is there any literature specifically about this? If not, there should be. It seems to me that the CBT/etc industry has been premised on a self-perpetuating body of work in which researchers and practitioners have figured out how to game the system and generate a methodologically flawed but politically expedient "evidence base" for what they are doing. Then you can't question any of it without questioning all of it. And since reversing course on this is deemed unacceptable and politically undesirable, it all continues. It has come too far to turn back.

That's a very eloquent post, mind if I borrow it?

or even 'cognitive manipulation bias'?

I vote for this, some one please set up a poll.

 

[Trish]

I agree 'cognitive manipulation bias' is a good term.

I think there is a huge ethical issue not addressed by the proponents of the use of CBT for changing the beliefs a patient holds about the cause of their symptoms to fit the therapist's beliefs, and getting them to ignore symptoms.

So they are not just helping patients cope with negative thoughts, as CBT is supposed to do, they are getting patients to believe something that is not true, and to behave in ways that may make them sicker. In a personal relationship that is called 'coercive control' and in the UK is a criminal offence.

 

[Peter T]

• Taught bias
• Coached response bias
• Response coaching in subjective measures
• Coached self reporting bias
• Experimenter trained modification of subject’s self reporting
• Trained modification of self reporting for subjective measurements
• Research induced modification in self reported responses
• Intervention corrupted self reporting

 

[Ariel]

That's a very eloquent post, mind if I borrow it?

Sure; for what? Do PM.

I like the word "coached" if "manipulation" seems too strong.

 

[Barry]

If a patient's condition is genuinely down to their flawed beliefs (and there are plenty of psychological problems where that really is the case), then in a sense that person's beliefs, and the behaviours that result from those beliefs, can themselves be considered to already be biased ... beliefs that are biased away from what is considered normal range for healthy living. My point being that for such conditions, the condition itself can be considered the consequence of biased beliefs, biased thinking, biased away from a psychologically healthy norm.

So the remedy is to try and correct that bias by applying opposite bias, to correct and neutralise the unwanted bias. e.g. If someone is convinced they are worthless and completely unlikeable, unlovable, etc, then corrective psychological intervention might be considered to help them shift their beliefs and be much more positive about themselves - the treatment is itself about inducing bias, it is what it does! And properly applied to the right psychological conditions it is suited to, then that is OK.

But the BPS psychs presume their bias-grounded interventions (CBT, GET etc) can be applied way outside the scope of conditions they are suited to.

So to me the fundamental problem is that CBT and GET are formulated to be bias-inducing treatments, it's their very purpose. So it is hardly surprising they induce bias in the way people think, and to self report with significant bias on their physical illness.

I think it might reasonably be called bias-grounded-intervention bias, or something like that.

 

[Sarah]

So to me the fundamental problem is that CBT and GET are formulated to be bias-inducing treatments, it's their very purpose. So it is hardly surprising they induce bias in the way people think, and to self report with significant bias on their physical illness.

I think it might reasonably be called bias-grounded-intervention bias, or something like that

Yes I was thinking yesterday along the lines of a bias modification bias, as at least certain aspects of CBT address cognitive distortions or processing biases which supposedly lead to biased or irrational thoughts and beliefs and resulting behaviours (although also goal setting, developing coping strategies) . GET likewise is contingent on the participant reconciling to the idea that increasing is possible without harm and resultant increases in symptoms are expected and not indicative of harm. Although 'Cognitive bias modification' is a psychological approach in its own right and distinguishable from CBT.

 

[Arnie Pye]

My bold :

If a patient's condition is genuinely down to their flawed beliefs (and there are plenty of psychological problems where that really is the case),

I must admit I don't actually believe that there are so many psychologically or mentally ill people around as BPSers want us to believe. When I was growing up there were a very few people I met who were considered to be "a bit odd". I suppose society and people have changed in my lifetime, but I really don't believe that most of the population has become mentally ill. But that seems to be what the powers-that-be want us to believe.

 

[Barry]

I must admit I don't actually believe that there are so many psychologically or mentally ill people around as BPSers want us to believe.

I don't recall saying I thought there were. And I don't see the relevance. For such a person genuinely needing such help, then I strongly believe they would be very grateful for it. I personally think society contains many people needing such help, but people don't recognise it, and just dismiss them as being a bit odd, a bit weird etc. They get bullied and p*ssed on, when what they really need is some help, and recognition they need some help. It is just as big a problem as people with ME/CFS being dismissed, not believed, and not getting the help they need.

The problem is not with CBT itself, but the gross misapplication and misappropriation of it. If you misuse/abuse a tool, no matter how useful the tool when used correctly, then the results can be catastrophic. I knife for example.

 

[Arnie Pye]

I don't see the relevance

Perhaps it is just me then. It seems to me that a huge percentage of people I come across online or in real life are on anti-depressants or whose doctors have blamed their symptoms for many different medical conditions on mental illness. It is rare for patients to ever be taken at face value and believed, there is always a concerted effort to blame the patient in some way, or to suggest that the patient is an attention-seeker or a drug-seeker or a hypochondriac or has a personality disorder. The last thing that doctors seem to do is to actually believe the patient and take what they say as gospel truth.

If someone needs help for their mental health then I obviously have no issue with that, and I agree they should be given it. But I really don't think there are as many people with mental illness as the BPSers and the CBTers would like to think.

I imagine many of the people who have ME have had their mental fitness doubted at some point, since so many doctors are confident that the cause of ME is psychological.

I was given CBT via IAPT some years ago at a time when I really needed it. But the quality of the help was dire, and achieved absolutely nothing.

 

[Sean]

I don't doubt there are psychosocial factors that contribute to poor health, physical and mental.

Including misdiagnosis and mistreatment by perverse applications of the psychosocial paradigm.

 

[Hutan]

So the remedy is to try and correct that bias by applying opposite bias, to correct and neutralise the unwanted bias. e.g. If someone is convinced they are worthless and completely unlikeable, unlovable, etc, then corrective psychological intervention might be considered to help them shift their beliefs and be much more positive about themselves - the treatment is itself about inducing bias, it is what it does! And properly applied to the right psychological conditions it is suited to, then that is OK.

Yes. Although there is still the risk that the intervention has taught the person that they should not think they are unlikeable or afraid of spiders. And therefore, they know that, when they are asked at the end of the intervention, 'are you unlikeable/afraid of spiders' they should say 'no, of course not' to demonstrate that they have learned well. But there is still a huge risk of bias there. Even if CBT makes some sense, there still needs to be objective outcomes to guard against the instructed bias.
(I like 'inherent bias', 'taught bias', 'instructed bias.)

This paper on outcomes in anorexia nervosa research is interesting - a different situation to be aware of when we push for objective outcomes for every treatment study.
Treatment outcome reporting in anorexia nervosa: time for a paradigm shift?
In that case, there is concern about just having an objective outcome - weight, without any measure of cognitive change. (This is in the context of utterly abysmal recovery rates in that serious disorder.) They note that longer term followup could help a lot (weight would be an accurate outcome if measured over years) but the number of people seeking further treatment of different sorts complicates long term outcomes.

In studies adopting weight as an exclusive or primary metric of outcome, potentially important differences may go undetected, as may their implications for our understanding of both disorder- and treatment-specific mechanisms.

Moreover, the implicit assumption that weight-based recovery is a proxy for broader cognitive recovery is not supported by evidence, as the constellation of cognitive and affective challenges facing those with AN, including the fear of weight gain, body dissatisfaction, emotional dysregulation, and an ongoing fear of calorie-dense foods, frequently persist after significant weight gain has been achieved [7]. Thus, relying on weight outcomes alone in drawing conclusions from randomized controlled trials (RCT)

There has been experimentation with combined weight and cognitive outcomes, but the paper notes that the wide range of approaches leaves the field unable to compare treatments:

Moreover, varying definitions of what constitutes a ‘good outcome’, even when applied to a single clinical trial, yields remission rates ranging from 2% - 96% [10], which has precluded meaningful between-trial comparisons.

I'd argue that subjective outcomes are not reliable on their own, even in anorexia nervosa, even for measuring cognitive change, and so thought needs to be given to coming up with end of treatment objective outcomes that better reflect desired cognitive change, if such change is the paradigm of the treatment. (As I've said before somewhere, I suspect anorexia nervosa may have more physical causes contributing to the pathology than is often imagined.). I'm not sure what objective outcomes would be useful - maybe activity monitoring over extended periods? And making subjective data more reliable - perhaps by collecting information about body image each week over an extended period rather than just once at the end of the treatment, or by having parents periodically reporting on attitudes to food when young people are the patients.

I think this example illustrates the point @Jonathan Edwards was making - a standard approach to grading research is very difficult. An objective measure, even a relevant one, measured for too short a time may be misleading and limited.

It was interesting to see recommendations in the anorexia nervosa paper that follow-up data has to be made more useful by thinking about how to deal with any on-going treatment. And also the recommendation that there be 'an agreed upon outcome reporting framework' to ensure best-practice in research and facilitate between-trial comparisons. I wonder if that idea could be a way forward? So, for ME/CFS, or IBS or any particular disease, standard outcome measures tailored to that disease could be agreed for all treatment studies. Research funders could require adherence to the standard, and it would be mandatory to report against them, in addition to other outcomes the researchers might want to add. I could imagine niche funders like the Mason Foundation and MERUK could implement something like that. And patient organisations endorsing a treatment study could require the standard outcome measures.

and details of ongoing treatment engagement among those included in follow-up data, will be a crucial step as the field transitions toward the development of precision treatments. In addition, the field’s adherence to an agreed-upon outcome reporting framework that incorporates these recommendations will also facilitate between-trial comparisons, and in turn, more informed practice guidelines for AN.

 

[Barry]

(I like 'inherent bias', 'taught bias', 'instructed bias.)

Without going into detail I will claim some personal experience here. In cases where shifting of perceptions and beliefs are valid, then once such a shift in perceptions/beliefs occurs, the person progressively comes to live it and be it. It is not that such a shift makes you something you are not and never could be; it is that you were entrenched into a self-perception that had already gone wrong at some point previously, and correcting it can be hugely beneficial. So when such a remedy works properly for the right people, it is not a superficial bias overlaying and masking their reality.

But when it is misapplied, then the bias will be overlaying and masking their reality, and thereby potentially leading to false optimisms about one's health. It is also likely why such falsely induced misperceptions don't stand the test of time, and people revert, because they will simply be reverting to their reality, their truth, which invariably resurfaces.

So the naming of such a bias is important I feel, and none of your suggestions click with me to be honest, though none of mine to date do either. It is the fact we are dealing with a treatment that, by its very nature, is intended to bias beliefs and perceptions relative to where they currently are. But not sure how to name that as source of bias, because unlike all the other biases, it is intentional, and it is the misapplication of an intentional bias that is the problem, rather than an unintentional bias that has crept in.

Misapplied intentional bias?

 

[Peter T]

I'd argue that subjective outcomes are not reliable on their own, even in anorexia nervosa, even for measuring cognitive change, and so thought needs to be given to coming up with end of treatment objective outcomes that better reflect desired cognitive change, if such change is the paradigm of the treatment. (As I've said before somewhere, I suspect anorexia nervosa may have more physical causes contributing to the pathology than is often imagined.). I'm not sure what objective outcomes would be useful - maybe activity monitoring over extended periods? And making subjective data more reliable - perhaps by collecting information about body image each week over an extended period rather than just once at the end of the treatment, or by having parents periodically reporting on attitudes to food when young people are the patients.

When I was an undergraduate over forty years ago, and certainly when I was in clinical practice, there was an understanding that when dealing with real life issues outside the lab the methodological difficulties in obtaining unambiguous answers given our current knowledge were potentially insurmountable. This was not taken to mean that, like Freud, that you just gave up on the scientific method, but that rather you looked at the problem from every possible angle. When every available research technique is potentially flawed, it is only when radically different sources of evidence being to show a consensus that you can start to make your conclusions.

@Hutan’s comment suggest a starting point as to how this could be addressed with anorexia nervosa, and if my imperfect memory is correct people were trying to do this with work on dementia twenty five or thirty years ago, a situation where often the subjects were unable to fill in endless questionnaires and self rating.

Interestingly in type of research we are looking at here, are not only are researchers failing to address issues of bias in their preferred methodologies but they are increasingly narrowing their own use of different experimental designs and measuring tools.

If your intervention is designed to change how people perceive themselves and the world, as @Barry suggests, in one sense demonstrating changes in self reporting through questionnaires or self rating is of itself a good thing, even then that alone does not tell you anything about real life changes outside the artificial experimental setting. With most issues be it a stammer, where fluency is achieved in the clinical setting more work is required to generalise it to the clients daily life, or a phobia where tolerance of the idea of spiders in the psychologist’s office is not the same dealing with a spider on your pillow at 3am, successful intervention needs to include real life changes. So even taking such research on its own terms, use of questionnaires alone can never distinguish between between changes in the subject’s self reporting behaviour and changes in how they interact with the world.

In this context the proponents of GET or CBT should not only be asking people about how they feel and to report retrospectively on their activity, they should be going into the patient/subject’s homes, workplaces or schools, which is relatively easy now given technologies obviates the need for the research to be physically present all the time. My first job was on a number of small islands, making it hard to work with patients in just a clinical setting, ensuring I was directly confronted with what mattered to the patient, and so was also able to work with the the admin assistant at the crofting commission office, the bar staff in the pub, the parish priest, etc. As a speech & language therapist it was a fantastic opportunity to be able to address the real life situations where the individual was communicating, and gave me opportunity to observe how formal clinical activity did or didn’t related to real life communication.

GET or CBT’s (albeit inappropriate) objectives are to both change an individual’s understanding and in consequence also their interaction with the world. So even on their own terms this is impossible to evaluate with just questionnaires and self ratings. It is impossible to distinguish research induced bias in self reporting from successful real life behavioural changes without seeking to measure those changes.

But also given the complexities of real life research, you need independent confirmation that the researcher’s beliefs about the subject’s world view status are correct and that the subject’s beliefs about their reality are inaccurate and unhelpful as well as demonstrating change both in beliefs/perceptions and in real life activity.

(Gardener arrived early, so will post without final edit)

 

[Sean]

So even taking such research on its own terms, use of questionnaires alone can never distinguish between between changes in the subject’s self reporting behaviour and changes in how they interact with the world.

This.

 

[Sarah]

Yes. Although there is still the risk that the intervention has taught the person that they should not think they are unlikeable or afraid of spiders. And therefore, they know that, when they are asked at the end of the intervention, 'are you unlikeable/afraid of spiders' they should say 'no, of course not' to demonstrate that they have learned well. But there is still a huge risk of bias there. Even if CBT makes some sense, there still needs to be objective outcomes to guard against the instructed bias.
(I like 'inherent bias', 'taught bias', 'instructed bias.)

I think trying to show you have learnt well is more a reactivity effect of trying to meet perceived researcher expectations than being intrinsic to the intervention or necessarily due to undergoing it, regardless of how the 'correct answer' the participant should be moving towards is discovered, i.e., whether it's patent due to the nature of the trial or they discovered it in the course of undergoing the intervention.

 

[Arvo]

Not sure whether this is actually needed.

As a non-expert in research methodology, I'd say it is. An explicit term for it is especially needed for dutch bps research, as influencing the participants is part and parcel of what they do. (It's of course also so for the UK papers, but I get the idea they are usually a bit more circumspect about what they're doing.)

Changing the participants views and thoughts are a core part of the treatment (like e.g. manipulating them into reconsidering the meaning of the word "recovery", and revising their limitations as normal), as is emphasising that the treatment works during the CBT.

See e.g. this quote from Is a full recovery possible after cognitive behavioural therapy for chronic fatigue syndrome? Hans Knoop, Gijs Bleijenberg, Marieke F.M. Gielissen, Jos W.M. van der Meer, Peter D. White. Psychotherapy and Psychosomatics 2007; 76: 171-176

"The first clinical implication of the present study is that a therapist delivering CBT can tell the patient that substantial improvement is likely to occur and that full recovery is possible. By communicating this, the therapist can counterbalance factors that lower the expectations of the patient. Examples of such factors are a negative attitude of certain patient advocacy groups towards behavioural interventions or an oversolicitous attitude of significant others in response to CFS.24 There is empirical evidence that lower expectations of patients have a negative influence on therapy outcome.

The second clinical implication of the present study is that recovery is a construction. The percentage of recovered patients differed depending on the definition of recovery used. It is possible that a patient has another concept of recovery than the therapist. It is important that they jointly (re)formulate a definition which forms the objective of the treatment."

Hand Knoop's current website to recruit participants for his iCBT study on Long Covid reads like an advertising pamphlet, with repeated emphasis on how succesful CBT is in various ways, which is scientifically disastrous, but makes perfect sense in what they actually do as "treatment", which is manipulating the patient into considering themselves "recovered", even if they only seem so subjectively on paper. As Bleijenberg puts it:"The art of cognitive behaviour therapy is to broaden the patients’ vision to a future life as a well person." May as well start at recruitment for those favourable outcomes.


Regarding a term for pulling this crap, I would say it would work best if it contained an indication of action, or even purposeful action. Simply calling it a "perception bias" for example leaves out that there have been actions taken to get to that result, it didn't happen due to circumstances.

I also like "cognitive intervention bias".

Other suggestions: Active Cognitive Influencing, and, Placebo Inducing Action. Which would lead to bias in a study.

 

[Arvo]

I think there is a huge ethical issue not addressed by the proponents of the use of CBT for changing the beliefs a patient holds about the cause of their symptoms to fit the therapist's beliefs, and getting them to ignore symptoms.

So they are not just helping patients cope with negative thoughts, as CBT is supposed to do, they are getting patients to believe something that is not true, and to behave in ways that may make them sicker. In a personal relationship that is called 'coercive control' and in the UK is a criminal offence.

This exactly. It is actually a topic I am collecting information about for a possible article. The similarity between some of the the tactics of domestic abusers and those applied by the Wessely School bunch are unmistakeable (isolation, gaslighting, sadistic abuse etc.), both as part of the therapy and in papers/newspaper articles etc.

It is no surprise that you are basically considered "recovered" (or acceptable) when (like the victim of a controlling abuser) you think and act/behave like they decide you should, at least on paper.

This was for example demonstrated perfectly in an interview with Bleijenberg and Prins, who said there were three categories of patients: those who were in a battle for their benefits and therefore invested into emphasising/being focused on physical complaints/the insistence they are ill, those who did too much, and those who did too little.
If those are the factors that "maintain" ilness, then it follows logically that recovery lies in not insisting you are ill , and doing activities in a frequency and intensity that is not considered a "too" by the therapists. (In the article it involved former bedbound patients playing tennis several times a week.) Which is the description of CBT for ME.

 

[Barry]

Many have already highlighted this issue but I was wondering if we should argue for a separate risk of bias domain for interventions that influence how patients report their symptoms. I think that might make the problem clearer to those who haven't taken it seriously thus far.

I have come to realise (see my post #25, #32 etc in this thread), that psychological treatments like CBT and GET are in a different class to other treatments, in that their objective actually is to bias people's beliefs/perceptions away from their current state. Which is fine for people whose beliefs/perceptions are screwed up, and need them shifting to a new norm. But disastrous for people whose beliefs/perceptions are OK, and don't need them shifting away from that. These treatments' very operating mode is to bias beliefs/perceptions from where they currently are. They may have their place, but when misused can be disastrous.

When we speak of bias in the context of trials we typically mean the shifting of people's beliefs/perceptions in some way, and these treatments are designed to achieve just that.

 

[Arvo]

@Barry , I was just thinking about your "bias-grounded-intervention bias". I'm not sure if the word "bias" is applicable here. The aim is to align the patient's perceptions with what the therapist deems "healthy/normal". It would be a perception-altering intervention bias.

Given the very low treshold for it becoming abuse (see also post #37), I would argue that such a therapy should never ever be given to anyone except when there is explicit permission from the person undergoing it, because they fully understand that their perceptions "need" altering. Otherwise, who decides what beliefs are "screwed up" and need to be altered, and to what norm? (That is for example an excuse for gay conversion therapy) Scary stuff.

And I'm not even mentioning the debate wheter CBT is even useful for changing people's "wrong perceptions" in the first place, valid or not.

 

[Arnie Pye]

That is for example an excuse for gay conversion therapy

That is a really good comparison to use when telling people people are being told their lived experience of poor health is "wrong", and it could be useful in future. Thanks.

Edit : I managed to confuse myself...