Let’s talk about pain catastrophizing measures: an item content analysis (2020) by Crombez et al.

This seems to be an important article, hits many points and arguments that have been made repeatedly on this forum, namely that there is a problem with the content validity of questionnaires that measure catastrophizing.

Here the Belgian authors looked at the validity of six pain catastrophizing measures in a sample of 96 persons (not a patient group).

The article is open access at: https://peerj.com/articles/8643/

 

Some interesting quotes from the paper:

I think this might interest you @Snow Leopard @Woolie @Hutan @strategist @Jonathan Edwards @Trish @Lucibee @Esther12 and others

 

Let's hope this will lead to some proper scrutiny and debate on questionnaires and patient-reported outcomes measures in the field of ME/CFS. I noticed for example:
https://twitter.com/user/status/1236233574958927872

 

I wrote to the first author of the study with the following twitter thread (copied below in full)
https://twitter.com/user/status/1236289693349810176


1) Dear Prof. Crombez,

Thank you for this important study.

I’m a ME/CFS patient who follows research closely.

I think that the content validity of catastrophizing and kinesiophobia questionnaires is a major issue in ME/CFS research that hasn’t received the debate it deserves.

2) Catastrophizing e.g. has been assessed with the Cognitive and Behavioural Responses Questionnaire (CBRQ). It includes items such as "my illness is awful and I feel that it overwhelms me" which might reflect the severity of symptoms rather than the patient’s response to them.

3) Another example are questionnaires assessing fear avoidance or kinesiophobia. These usually rely on statements such as “physical activity makes my symptoms worse”. Yet, the experience of physical activity making symptoms worse is considered to be a hallmark symptom of ME/CFS.

4) This is referred to as post-exertional malaise (PEM) a required symptom in many ME/CFS case definitions. So in some studies, participants are first selected to have symptom exacerbations following exertion and then this experience is relabeled as an indication of kinesiophobia

5) I describe such a study in this commentary: “The risk of labelling CFS symptoms as unhelpful cognitive responses.” https://journals.sagepub.com/doi/abs/10.1177/1359104519853849

6) I suspect you might have heard the notion that ME/CFS have a prejudice against psychological research and treatment. As someone closely involved with patient organizations and online support group I very much doubt this is the case for the majority of ME/CFS patients.

7) Patients talk openly about depression, loneliness, stress or fear about the future and seek support on how to cope with symptoms. The controversy is mostly about constructs such as kinesiophobia and catastrophizing and how it has been measured in research.

8) Patients often feel that the nature and severity of their symptoms are wrongly relabeled as a maladaptive coping response to more benign bodily distress.

9) I suspect closer scrutiny of the questionnaires on which such an approach is based would help to resolve the conflict and controversy in the field of ME/CFS and improve the care of patients.

Thanks for listening.

Kind regards,

Michiel Tack

 

I think the concept of pain catastrophizing has more to do with not wanting to hear how horrible pain is than patients being psychologically disturbed in a way that makes them complain much more about pain than what would be appropriate. Not that anyone would be able to judge how much complaing would be appropriate.

Also I think complaining about pain to some degree has a social function of communicating how much one is in need of help.

So let's teach healthcare workers to communicate their own needs better, and to provide better healthcare pathways so that patients don't feel neglected. It's easier to bear a symptom burden if you feel like there is a treatment way forward.

 

Research into subjective experience should be undertaken by people who have actually experienced what is being researched, otherwise that is a bit like men wanting to explain the subjective experience of childbirth to women.

It's hard to imagine that anyone who has experienced serious and long lasting chronic pain would come up with a term like pain catastrophizing.

 

THIS x 100!

 

It's the same with HIV-related fatigue. The concept depends on the worry being excessive and/or unwarranted. Just because it is not linked to a specific pathophysiology does not give them the authority to decide that concern about it is excessive or unwarranted.

 

Especially when there is no objective means of measurement of pain or fatigue or whatever.

Then there's also no objective means of measuring worry or concern.

It's like building a skyscraper with marshmallow for the foundations and whipped cream cement.

 

I think the anglo-saxon cultural expectation of stoicism (versus the Latin one of expressing one's emotions of pain) play a role here in the concept of pain catastrophizing. One is expected to (I've read too many times) to "just get on with your life."

Alas, it doesn't work that way.

 

Brilliant @Michiel Tack

oh this this this.
Or indeed of women wanting to educate blokes that being kicked very hard in the groin should not make the knees buckle, the purely female bps view of which would be that it is clearly catastrohpising by men who are far too concerned about & involved with their penises. They need to change the way they think about them & that will make it hurt much less when they kick them next time.

The whole ruddy concept is the height of arrogance iyam.

It makes me think of 2 tv shows...
Friends where Chandler is saying to his surrogate while in labour "I wonder which is more painful childbirth or being kicked in the nuts? we can never know because no one can experience both", then she starts crying out in pain & says "it's time to kick you in the nuts so we can find out!"

And I saw a bit of Downton Abbey the other day where the 'sir' Harley street gynaecologist called in to help Sybil give birth (during which she dies), said something like 'childbirth, women will make their fuss about it, but if it's managed correctly...' in just the same kindly patronising, dismissive manner, that the BPSers talk about to us with. I saw several of them reflected in that moment, so clearly.

ETA sorry that was rather uncouth, apologies to anyone offended.

 

Catastrophizing goes around in pain self-management programs and in pain research. They believe that patients’ thoughts make their pain worse.

It also appeared in a research questionnaire for a non-related surgical follow-up. I didn’t like that, and since i made comments on the questionnaire and since they will send me many more questionnaires in the future, they have removed the questions pertaining to catastrophizing.

This is an important issue that goes beyond ME.

 

I suspect one day science will have advanced to realize:

All research into subjective experience is disqualified if researchers lack that lived experience.

That's why I'd like to see physicians in training required to experience severe illness, like ME, for a week. That lived experience is essential and priceless and cannot be taught.

 

There is really not enough clear and specific language for nuances and varieties of pain (or fatigue for that matter). It's difficult to have an insightful observation without both knowing the experience and then having the words to describe it.

Everything I've seen from the BPS cabal comes across as amateur. Vague, ill conceived babble. And an imaginary evidence base.

IMO-- just for emphasis--the reason so many providers of therapy can believe in it's efficacy is because of this fundamental flaw in thinking that they understand what it is they are dealing with. They've pulled a muscle exercising or they've been really, really tired now and then.

If they only knew. What a revelation moment that would be.

 

this

 

https://twitter.com/user/status/1236681752615231488

Code:

https://twitter.com/GeertCrombez/status/1236681752615231488

Thank you @Michiel Tack for highlighting this paper and reaching out to the authors with your excellent tweet series.

I won't be able to read the paper at the moment, but your quotes sound very promising.

Even more encouraging to me seem the authors' replies -- they take a pwME's questions and arguments seriously.

And the tweet posted by @Cheshire intrigues me, too:

Not able to catch up with the latest contributions to the discussion that again seem to me very valuable.

Just struggled to understand this bit in 6):

https://twitter.com/user/status/1236611934398615553

Code:

https://twitter.com/S_Van_Damme/status/1236611934398615553

The first part I think applies to any life altering illness.

So would they suggest that....

holds true for any other life altering illness, too? (And in case of ME, which treatment trajectory do they mean?)

I would rather say patients should be offered psychological support, leaving the choice to them.

Edited for clarity.