MSEsperanza

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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:
Purpose
To critically appraise, compare and summarize the measurement properties of self-report fatigue questionnaires validated in patients with multiple sclerosis (MS), Parkinson’s disease (PD) or stroke.

Methods
MEDLINE, EMBASE, PsycINFO, CINAHL and SPORTdiscus were searched. The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist was used to assess the methodological quality of studies. A qualitative data synthesis was performed to rate the measurement properties for each questionnaire.

Results
Thirty-eight studies out of 5,336 records met the inclusion criteria, evaluating 31 questionnaires. Moderate evidence was found for adequate internal consistency and structural validity of the Fatigue Scale for Motor and Cognitive functions (FSMC) and for adequate reliability and structural validity of the Unidimensional Fatigue Impact Scale (U-FIS) in MS.

Conclusions
We recommend the FSMC and U-FIS in MS. The Functional Assessment of Chronic Illness Therapy Fatigue subscale (FACIT-F) and Fatigue Severity Scale (FSS) show promise in PD, and the Profile of Mood States Fatigue subscale (POMS-F) for stroke. Future studies should focus on measurement error, responsiveness and interpretability. Studies should also put emphasis on providing input for the theoretical construct of fatigue, allowing the development of questionnaires that reflect generic and disease-specific symptoms of fatigue.

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 can be found by looking up the forum tag "fatigue measurement scale". All threads with this tag can be found here:
https://www.s4me.info/tags/fatigue-measurement-scale/
 
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For some reason I'm not surprised that the CFQ is:rolleyes:
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.
This looks interesting, will read later, thanks for posting.
:)
(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
Psychometric assessments are tests or questionnaires that have been designed to measure constructs of interest in an individual or a target population. A goal of many of these self-report instruments is to provide researchers with the ability to gather subjective information in a manner that might allow for quantitative analysis and interpretation of these results. This requires the instrument of choice to have adequate psychometric properties of reliability and validity.

Much research has been conducted on creating self-report quality of life questionnaires for individuals with multiple sclerosis (MS). This article focuses on one in particular, the Modified Fatigue Impact Scale (MFIS). The article starts with a brief description of the rationale, construction, and scoring of the inventory. Next, the best available reliability and validity data on the MFIS are presented.

The article concludes with a brief discussion on the interpretation of scores, followed by suggestions for future research. This summative analysis is intended to examine whether the instrument is adequately measuring the impact of fatigue and whether the scores allow for meaningful interpretations.

Validity
[...]
Depression could be a symptom of fatigue, and fatigue could be a symptom of depression, leading to a long-standing debate about the causal direction between these variables. Tellez et al.11 found a clear relationship between depression and fatigue in individuals with MS, with a significant correlation (r = 0.70) between the MFIS total score and depression measured with the Beck Depression Inventory (BDI). Depression and fatigue are often associated with disease-specific variables such as disability and disease duration. When EDSS scores were controlled, the correlation between depression and fatigue remained positive.11 When these variables were analyzed using multiple linear regression, EDSS score, depression, and disease duration were all independent predictors of all the MFIS subscale and total scores.11 However, Greim et al.16 reported that depressed MS patients subjectively felt significantly more tired than nondepressed MS patients (mean [SD] = 49.8 [13.1] vs. mean [SD] = 32.6 [16.8]; P < .003), supporting the notion that a depressed mood can affect the subjective estimation of fatigue.
The validity of a subjective instrument can be strengthened when it is paired with an objective measure, provided that the measures are appropriate surrogates. The study conducted by Greim et al.16 assessed objective and subjective measures of mental and physical fatigue in individuals with and without MS. Participants completed subjective measures of fatigue, specifically the MFIS, before and after a 30-minute vigilance test (an objective test of mental fatigue) and a hand-dynamometer test (an objective test to assess physical fatigue). Depression was controlled during the study because of its possible influence on subjective and objective measures of fatigue. A significant correlation between the subjective feelings (MFIS) and the objective measures was observed in the individuals with MS. The individuals with higher levels of subjective fatigue performed worse on the objective measures. However, the depression scale (BDI) was significantly correlated with the measures of fatigue, confirming previous data indicating an interaction between fatigue and depression that can confound study results and subsequent interpretations

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 .
 
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.

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.
 
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 .
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.
Psychometric assessments are tests or questionnaires that have been designed to measure
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.
 
Moderator note
This post has been copied and following posts moved from this thread:
Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK (2020) Adamson, Wessely, Chalder

___________________

I have no idea how many people may come to this thread that are new to the bPs way of doing research so I thought I'd just put a link to the chalder fatigue scale for perusal if anyone's interested:

http://www.goodmedicine.org.uk/files/assessment, chalder fatigue scale.pdf

This scale is discussed here:

https://www.s4me.info/threads/explo...ic-fatigue-syndrome-1998-morriss-et-al.11065/

And these links and further info on various scales can be found here:

https://www.s4me.info/threads/questionnaires-and-scales-used-in-me-or-cfs-research.879/

In our Science Library.

Also, just want to ask all and sundry if you think it would be feasible for us to attempt to create a viable scale. The question first would be what are we measuring since we all know that ME is not just fatigue.

I realise it may be too big a project. But just put it out there.
 
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Also, just want to ask all and sundry if you think it would be feasible for us to attempt to create a viable scale. The question first would be what are we measuring since we all know that ME is not just fatigue.

I realise it may be too big a project. But just put it out there.
I've been wanting to do that for a long time but this is simply impossible without help from healthy scientific allies. I have no doubt we could create a tool that is massively superior to anything that already exists but it's a big project that needs institutional support and significant experience in clinical psychology. Maybe there's another more fitting field of expertise but I don't know what that would be.
 
Also, just want to ask all and sundry if you think it would be feasible for us to attempt to create a viable scale. The question first would be what are we measuring since we all know that ME is not just fatigue.

I think it's a wonderful idea but a big undertaking.

What exactly do we measure? Some (like me) object to the use of fatigue but others are happy with it. What we aren't very clear on is what the hell it is.

So first I think you would have to define it, or as many different versions of it that we can identify. Then work out how to differentiate between them.

Then who has what because some may experience multiple types.

And so on.

It's definitely a worthwhile project if we could get someone interested.
 
Also, just want to ask all and sundry if you think it would be feasible for us to attempt to create a viable scale.
Excellent proposition I think, but reckon at such an early stage should not be presumed to be a single scale. Instrument rather than scale, especially given it's not precisely known what variables need measuring, how they might interrelate, etc. First thing would be to try and identify what things need measuring, without initially getting sidetracked by how. A top-down approach.
 
What exactly do we measure? Some (like me) object to the use of fatigue but others are happy with it. What we aren't very clear on is what the hell it is.

This of course is all true but I don't think it needs to be overly hashed out. It could be decided by those with the ability to actually do the project what they feel is the important bits (with some preliminary input still) and move forward something that fits the needs that were defined.

That means there could be room for something else still and it would be for a group of people who feel that there is something useful in sussing out other details. The only qualifier being that something robust to the criteria is produced that can be Independently validated by researchers using it.

I wonder (not having done anything like this) is it necessary to provide guidance with regards to how the measures should be interpreted?
 
Isn't that what Leonard Jason has been doing for years with his questionnaires?

I don't know anything about LJ's questionnaire's. Someone else might be able to answer this.
If it's the case that he has some useful scales a question might be, do they only get used in US setting. So there might be room to either lobby for his scales if useful in the UK or to create scales with use in the UK specifically in mind.
 
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