Cancer Fatigue Scale

[Andy]

This got mentioned in something I was reading so thought I would post it here, so we could all see how bad it is.

The Cancer Fatigue Scale

This questionnaire will ask you about any sense of fatigue you might be experiencing. For each question, please circle only one number you think most aptly describes your current state. Try to answer on the basis of first impressions, without thinking deeply about each question.

Right now … No A little Somewhat Considerably Very much

1 Do you become tired easily? 1 2 3 4 5
2 Do you have the urge to lie down? 1 2 3 4 5
3 Do you feel exhausted? 1 2 3 4 5
4 Do you feel you have become careless? 1 2 3 4 5
5 Do you feel energetic? 1 2 3 4 5
6 Does your body felt heavy and tired? 1 2 3 4 5
7 Do you feel that you more often make errors while speaking? 1 2 3 4 5
8 Do you feel interest in anything? 1 2 3 4 5
9 Do you feel fed-up? 1 2 3 4 5
10 Do you feel you have become forgetful? 1 2 3 4 5
11 Can you concentrate on certain things? 1 2 3 4 5
12 Do you feel reluctant? 1 2 3 4 5
13 Do you feel that your thinking has become slower? 1 2 3 4 5
14 Can you encourage yourself to do anything? 1 2 3 4 5
15 Do you feel such fatigue that you don't know what to do with yourself? 1 2 3 4 5


The Calculation Method

Add the number together in every factor

Factor 1 = (items 1 + 2 + 3 + 6 + 9 + 12 + 15) − 7 P. (Physical subscale)
Factor 2 = 20 − (items 5 + 8 + 11 + 14) P. (Affective subscale)
Factor 3 = (items 4 + 7 + 10 + 13) − 4 P. (Cognitive subscale)

Add the factors together P. (Total scale score)

*Subtractions adjust for 0 as a state of no fatigue.

From
Development and Validation of the Cancer Fatigue Scale,
A Brief, Three-Dimensional, Self-Rating Scale for Assessment of Fatigue in Cancer Patients, 2000, Okuyama et al
Open access, https://www.jpsmjournal.com/article/S0885-3924(99)00138-4/fulltext

 

[Trish]

Looks like the usual unhelpful mix of tiredness, physical fatigue, cognitive fatigue and psychological stuff related to depression like losing interest and not wanting to start things.

While they keep trying to get a single score from so many possibly unrelated factors they will go on getting it wrong. I assume the treatments tied to this are the usual CBT and GET.

 

[Shadrach Loom]

Looks like the usual unhelpful mix of tiredness, physical fatigue, cognitive fatigue and psychological stuff related to depression like losing interest and not wanting to start things.

While they keep trying to get a single score from so many possibly unrelated factors they will go on getting it wrong. I assume the treatments tied to this are the usual CBT and GET.

I thought that people with cancer were allowed to feel shit without anyone trying to jolly them out of it.

 

[Andy]

I assume the treatments tied to this are the usual CBT and GET.

Even 'better'....

Comparative effect of progressive relaxation technique and Benson's technique on anxiety and fatigue in cancer survivors - an experimental study

https://www.sciencedirect.com/science/article/abs/pii/S0147027222000927

 

[bobbler]

Looks like the usual unhelpful mix of tiredness, physical fatigue, cognitive fatigue and psychological stuff related to depression like losing interest and not wanting to start things.

While they keep trying to get a single score from so many possibly unrelated factors they will go on getting it wrong. I assume the treatments tied to this are the usual CBT and GET.

Seems reminiscent of Chalder's 'fatigue scale'

 

[Ariel]

"Do you feel fed-up?" I mean, come on.

 

[DokaGirl]

"Do you feel fed-up?" I mean, come on.

Absolutely! Fed-up with these leading questionnaires.

 

[DokaGirl]

I thought that people with cancer were allowed to feel shit without anyone trying to jolly them out of it.

Thank you for the laugh!

How terrible to have a very serious, still often fatal disease, and to be psychogically poked and prodded. For the good of what?

 

[bobbler]

14 Can you encourage yourself to do anything? 1 2 3 4 5

Is a particularly invalid question and should never be allowed to be used - nothing could be taken from such an answer because it is unclear specifically what it is even asking

I can encourage myself to do something when in an utter crash - but it doesn't mean I can do it, as it is somewhat like being locked-in

I'm pretty sure that they are inferring the meaning/interpretation to be taken as whether you can 'do something by encouraging yourself', yet will interpret responses as an issue of motivation.

Taking an answer of 'no' would be inaccurate in saying anything other than the fact that you can't do anything. But what is 'anything'? ambiguous again. Should be time-bound and specific in what they mean by that term. A physical activity when you are in a crash, or breath when you feel fine, or a game of tennis once a week just takes a bit of mind-over matter? I mean I know they 'don't like to separate mind and body' but.... that is just poor and symptomatic of an area that 'doesn't do diagnostics' because they don't adapt or have any different treatments?

Questions should never be ambiguous - and should always stem from a 'research question' where the meaning is defined and then carefully honed wording to ensure that it is 100% clear and 100% valid to the 'research question', this is a swings both ways, what do you mean Q that I assume they haven't picked up on because of someone's niche area being that they mean the motivationally-related inference.

 

[bobbler]

This got mentioned in something I was reading so thought I would post it here, so we could all see how bad it is.

The Cancer Fatigue Scale

This questionnaire will ask you about any sense of fatigue you might be experiencing. For each question, please circle only one number you think most aptly describes your current state. Try to answer on the basis of first impressions, without thinking deeply about each question.

Right now … No A little Somewhat Considerably Very much

1 Do you become tired easily? 1 2 3 4 5
2 Do you have the urge to lie down? 1 2 3 4 5
3 Do you feel exhausted? 1 2 3 4 5
4 Do you feel you have become careless? 1 2 3 4 5
5 Do you feel energetic? 1 2 3 4 5
6 Does your body felt heavy and tired? 1 2 3 4 5
7 Do you feel that you more often make errors while speaking? 1 2 3 4 5
8 Do you feel interest in anything? 1 2 3 4 5
9 Do you feel fed-up? 1 2 3 4 5
10 Do you feel you have become forgetful? 1 2 3 4 5
11 Can you concentrate on certain things? 1 2 3 4 5
12 Do you feel reluctant? 1 2 3 4 5
13 Do you feel that your thinking has become slower? 1 2 3 4 5
14 Can you encourage yourself to do anything? 1 2 3 4 5
15 Do you feel such fatigue that you don't know what to do with yourself? 1 2 3 4 5


The Calculation Method

Add the number together in every factor

Factor 1 = (items 1 + 2 + 3 + 6 + 9 + 12 + 15) − 7 P. (Physical subscale)
Factor 2 = 20 − (items 5 + 8 + 11 + 14) P. (Affective subscale)
Factor 3 = (items 4 + 7 + 10 + 13) − 4 P. (Cognitive subscale)

Add the factors together P. (Total scale score)

*Subtractions adjust for 0 as a state of no fatigue.

From
Development and Validation of the Cancer Fatigue Scale,
A Brief, Three-Dimensional, Self-Rating Scale for Assessment of Fatigue in Cancer Patients, 2000, Okuyama et al
Open access, https://www.jpsmjournal.com/article/S0885-3924(99)00138-4/fulltext

I've just noticed that 10/15 Qs are "do you feel..."

on top of that Q6 (of the remaining 5) is "do your body felt" and Q2 is "do you have the urge"

so the stats in 'the calculation method' section at the bottom are BS : they are all basically 'affective' and none are 'cognitive' or 'physical' according to their wording.

If they can't understand that they don't even know their own area...

 

[rvallee]

Wow, this is awful. The real issue is with evidence-based medicine. The conclusion is difficult to avoid at this point: things aren't just bad when it comes to us, they're generally bad, the only difference is that for us there is the complete absence of any good research, no diamonds in the dirt, it's only dirt. Because biopsychosocial is all dirt, the only diamonds are found in cutting-edge labs and they don't have the scale for that when it comes to us.

The issue is way broader than just ME, and not even just chronic illness in general. It's that removed from biology, medicine has almost no relevant useful skills. All the training is on biology, the entire discipline is built out of understanding it, but without a plan B for when they don't, without even the notion that having a plan B is worth considering: known/accepted pathophysiology or bust.

And as was discussed, yesterday I think, this is why the issues plaguing our research fall flat: they're normal, bad is normal. EBM is built out of bad evidence, because it literally doesn't care whether evidence is good or bad, it's about what's popular. It's even how the lack of progress in LC is framed: no consensus. Which is false, there is a prior consensus, and it's wrong, has no basis in evidence, has no scientific validity. But it is popular, and popular but wrong somehow make a right.

The nexus where medicine meets patients, the subjective experience of illness, is basically completely unbeaten path. It's too far outside the actual skillset of medicine: dealing with living tissue and isolated parts of organ systems. Everything else is basically tacked on top of it awkwardly, without much thought put into it.

 

[DokaGirl]

I've just noticed that 10/15 Qs are "do you feel..."

on top of that Q6 (of the remaining 5) is "do your body felt" and Q2 is "do you have the urge"

so the stats in 'the calculation method' section at the bottom are BS : they are all basically 'affective' and none are 'cognitive' or 'physical' according to their wording.

If they can't understand that they don't even know their own area...

Agreed. Heavily weighted towards sussing out depression.

ETA: because medicine can't figure out, or fix the fatigue in cancer, it must be caused by a psychological failing. Good grief. With this kind of thinking, there is really no way anyone should be incapacitated by any disease, or other setback. In fact, there should be no setbacks in life, or rather we should never interpret them as such.

 

[Hutan]

so the stats in 'the calculation method' section at the bottom are BS : they are all basically 'affective' and none are 'cognitive' or 'physical' according to their wording.

Yes.
Q. 3 Do you feel exhausted?
Q. 5 Do you feel energetic? (measured in the inverse)
These questions are essentially asking the same thing. But one is physical and one affective. It makes no sense whatsoever.

As for Q. 12. Do you feel reluctant? (which is in the physical category, of course)
Huh? Surely that's affective? Reluctant to do what? Lie down? Go for a jog? Eat ice cream? Answer the questionnaire?

Try to answer on the basis of first impressions, without thinking deeply about each question.

I think we've all failed to follow that instruction. Perhaps they hope that people will answer so fast they won't realise how stupid it is.

 

[bobbler]

Wow, this is awful. The real issue is with evidence-based medicine. The conclusion is difficult to avoid at this point: things aren't just bad when it comes to us, they're generally bad, the only difference is that for us there is the complete absence of any good research, no diamonds in the dirt, it's only dirt. Because biopsychosocial is all dirt, the only diamonds are found in cutting-edge labs and they don't have the scale for that when it comes to us.

The issue is way broader than just ME, and not even just chronic illness in general. It's that removed from biology, medicine has almost no relevant useful skills. All the training is on biology, the entire discipline is built out of understanding it, but without a plan B for when they don't, without even the notion that having a plan B is worth considering: known/accepted pathophysiology or bust.

And as was discussed, yesterday I think, this is why the issues plaguing our research fall flat: they're normal, bad is normal. EBM is built out of bad evidence, because it literally doesn't care whether evidence is good or bad, it's about what's popular. It's even how the lack of progress in LC is framed: no consensus. Which is false, there is a prior consensus, and it's wrong, has no basis in evidence, has no scientific validity. But it is popular, and popular but wrong somehow make a right.

The nexus where medicine meets patients, the subjective experience of illness, is basically completely unbeaten path. It's too far outside the actual skillset of medicine: dealing with living tissue and isolated parts of organ systems. Everything else is basically tacked on top of it awkwardly, without much thought put into it.

It is awful full-stop, I'm shocked at how people are paid for any job for this quality.

I just re-read my comment about the 'encourage' Q. One aspect of my job for many years was that people would come to me if they were designing a survey - of any kind, even if it was just a quick feedback survey on something.

This could easily have been the tone and level of what I'd have given to a student intern who'd never done any survey before and certainly had no subject background (the 'have a go and we'll go from there' task) - hence why it is so kind and worded to be helpful to learning, or a colleague I wasn't out to upset but help, old habits die hard.

If I was actually assessing the whole thing including scientific rigour, whether it does what it is supposed to etc in response to an actual health condition that matters and whether the whole thing has any validity in relation to the constructs and research questions they have not identified......

It is just shockingly not good enough. Yet clearly people who are being paid very decent sums are churning out repetitions of this, stuff that is unacceptable even if someone was just reading for 'sense', because they have no choice - the area is so poor if someone did professional-level work equivalent to the entry step of the ladder of any other job in any other sector then they'd made themselves a target because their seniors would 'take offence at showing them up'?

EDIT: It's an area that is either bad through and through at all levels, or takes people from subjects where they have to do these basics and makes them go backwards. I struggle to name a subject where that feedback wouldn't be the marking response to a 1st yr UG submitting it as one of their first assignments that didn't count to their grades. In an exam or marked assignment what does this person think they would get points for methodologically?

Taxpayers and those paying these people's salaries should be the angry ones here - even if their aim is to manipulatively screw patients based on the ideology working for whoever they can at least do it with a bit of basic spellchecking and ability to do the basics correctly.

 

[JemPD]

11 Can you concentrate on certain things? 1 2 3 4 5

Eh? what things? is my concentration impaired that i can answer but can i concentrate on certain things... which things? reading? watching tv? an audiobook with my eyes closed? a tree i can see out of the window?

15 Do you feel such fatigue that you don't know what to do with yourself? 1 2 3 4 5

what on earth does that mean.

As for Q. 12. Do you feel reluctant? (which is in the physical category, of course)
Huh? Surely that's affective? Reluctant to do what? Lie down? Go for a jog? Eat ice cream? Answer the questionnaire?

yes i thought that what a stupid question. reluctant to do what. Its just a question that is so widely different in interpretation, that the meaning of the answer must be uninterpretable.

We are so far down the rabbit hole, the farce is so unbelievable that i sometimes feel like its not real but a bizarre dream.

 

[bobbler]

Yes.
Q. 3 Do you feel exhausted?
Q. 5 Do you feel energetic? (measured in the inverse)
These questions are essentially asking the same thing. But one is physical and one affective. It makes no sense whatsoever.

As for Q. 12. Do you feel reluctant? (which is in the physical category, of course)
Huh? Surely that's affective? Reluctant to do what? Lie down? Go for a jog? Eat ice cream? Answer the questionnaire?


I think we've all failed to follow that instruction. Perhaps they hope that people will answer so fast they won't realise how stupid it is.

Important issue to raise on the 'answer quickly' stuff

I haven't looked into the website behind this link in depth: https://www.futurity.org/answer-without-thinking-honesty-2182822/

but it does directly address this issue of "Try to answer on the basis of first impressions, without thinking deeply about each question." :

Asking people to answer a question quickly and without thinking doesn’t get honest responses, especially if the quick response isn’t the most socially desirable, research finds.

Same research in the following article on a different website: https://www.sciencedaily.com/releases/2019/10/191011112242.htm

Under time pressure, people tell us what we want to hear

OK here is the original paper: https://journals.sagepub.com/doi/abs/10.1177/0956797619867939?journalCode=pssa