Self-report fatigue questionnaires in multiple sclerosis, Parkinson’s disease and stroke, 2012, Elbers et al

Elbers, R.G., Rietberg, M.B., van Wegen, E.E.H. et al. (2012), Self-report fatigue questionnaires in multiple sclerosis, Parkinson’s disease and stroke: a systematic review of measurement properties, Qual Life Res (2012) 21: 925. https://doi.org/10.1007/s11136-011-0009-2

Abstract:

Chalder Fatigue Scale not mentioned.

As an aside, none of the included questionnaires is named after a person:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3389599/table/Tab3/?report=objectonly

Edit: Related S4ME threads:

S4ME: Submission to the public review on common data elements for ME/CFS: Problems with the Chalder Fatigue Questionnaire:
https://www.s4me.info/threads/s4me-...-with-the-chalder-fatigue-questionnaire.2065/

Science Library: Questionnaires and Scales used in ME or CFS research:
https://www.s4me.info/threads/questionnaires-and-scales-used-in-me-or-cfs-research.879/

 

Where can these questionnaires be found?

 

Aha! I think I saw this on the Parkinson's UK website when I was looking for articles on gait and visual aspects of motor fatigue. Thank you.

 

For some reason I'm not surprised that the CFQ is

This looks interesting, will read later, thanks for posting.

 

https://www.sralab.org/rehabilitation-measures/fatigue-severity-scale

https://eprovide.mapi-trust.org/instruments/functional-assessment-of-chronic-illness-therapy-fatigue

http://www.facit.org/facitorg/questionnaires

 

Thanks.

 

I think there are really not many questionnaires named after a person. I'm only aware of some named after an institution, e.g. DePaul University.

(I am not able to explain what I'm thinking about this review ATM. Just thought it was time to release this bit from my drafts folder in case it could be of use for some people here.)

 

Couldn't find a thread on the concept of fatigue in chronic illness and assessing fatigue in general, so leave this here:

Larson R. D. (2013). Psychometric properties of the modified fatigue impact scale. International journal of MS care, 15(1), 15–20. https://doi.org/10.7224/1537-2073.2012-019

Abstract

Validity

As the paper in the opening post, it's an older paper that I only skimmed and I can't assess the quality.

I wonder though whether a common weakness of fatigue scales might be that they mix up a symptom's assumed etiology, a symptom's manifestation (muscles/ motor /cognitive/ mental) and its impact on different areas of daily life.

Further thoughts on fatigue assessment see the thread on objective-assessment-of-diverse-types-of-ms-related-fatigue-and-fatiguability .

 

Yes, there is a total lack of clarity, or blurring of what is actually being measured. Fatigue usually means many different things when it comes to these questionnaires, but those who use them do not care about specificity.

Similarly, the measures of "validity" are very superficial (and usually don't account for or even consider factors such as the impact of variation of study (social) contexts) and how this biases responses.

You can tell by the language used that investigators don't appreciate, or understand the difference. Authors often say patients had higher/lower symptoms such as pain/fatigue etc. They don't realise that this is misleading. Patients simply reported higher/lower responses on symptom questionnaires.

 

So things are just as broken in "respectable" diseases then. What a disaster. Complete failure at the basic vocabulary level, from which all other failures naturally derive.

I don't understand this. Words have meaning. Why doesn't the meaning of words matter in scientific literature? A measurement, measuring, a measure, those are words that have a precise meaning, which explicitly excludes whatever it is a psychometric questionnaire delivers.

In the end it doesn't really matter which words are selected to have one precise meaning as long as this is decided. This is the lesson from technical standards: none are perfect but what matters is that everyone adopt them. In clinical psychology words can have multiple meanings and multiple words can have the same meaning, and those can vary depending on context, on who uses them and for what purpose. That meaning can change within the span of a single sentence.

Burn it all down and just start over and this time actually leverage patients' knowledge, this is ridiculous and leading nowhere.