Comparison of measures of functional capacity and the way the questions are worded to take into account ME/CFS limitations

Trish

Trish

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I have set up this thread specifically to look at the way the questions are worded and whether they adequately cover the specific problems of fatiguability and PEM that limit whether an activity can be repeated and whether we avoid some activities in order to be able to do others, or in order to avoid PEM.

Edit:

I temporarily locked this thread so I could do a series of introductory posts rather than one long one. It's now open for discussion.

If it's too much to read, I suggest you skip forward to posts #6 and #7
 
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SF-36 Physical Functioning

https://www.rand.org/health-care/surveys_tools/mos/36-item-short-form/survey-instrument.html
Physical functioning is one part of a multiple section quesionnaire that also covers cognitive, social and emotional functioning. Questions 3 to 12

The SF-36 Physical Function scale lists 10 activities ranging from vigorous sports to bathing or dressing yourself.
The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
Scores:
0 Yes, limited a lot
5 Yes, limited a little
10 No, not limited at all

Currently commonly used for ME/CFS, healthy people of working age score an average over 90, pwME are usually considered sick enough to participate in clinical trials if the score under 60 to 70. I think an improvement or deterioration of 10 is considered clinically significant.

It's not a very useful scale for ME/CFS because of fluctuations, subjective interpretation of whether one is limited a lot or a little, and not taking into account whether we can repeat the activity, or any effects of the activity on symptoms.
 
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WHO Disability Assessment Schedule 2.0 (WHODAS 2.0)

WHODAS 2.0 link | Thread

In the past 30 days, how much difficulty did you have in....

0 = No Difficulty
1 = Mild Difficulty
2 = Moderate Difficulty
3 = Severe Difficulty
4 = Extreme Difficulty or Cannot Do

There's a short 12 item version and a full 36 item version.

WHODAS 2.0 covers 6 Domains of Functioning, including:
  • Cognition – understanding & communicating
  • Mobility– moving & getting around
  • Self-care– hygiene, dressing, eating & staying alone
  • Getting along– interacting with other people
  • Life activities– domestic responsibilities, leisure, work & school
  • Participation– joining in community activities
The document at the link gives a very detailed analysis of all aspects of how to administer, two different scoring systems, interpretation of results, etc.
 
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FUNCAP Functional Capacity in ME/CFS

FUNCAP link | Thread

This questionnaire evaluates your functional capacity for a range of activities. No days are the same, base your response on an average day during the last month, not the worst nor the best.
If a question concerns an activity that you have not performed, such as showering while seated because you always shower standing up, then score as you think this activity would have affected you. Items described include necessary activities to perform them.

0: I cannot do this.
1: My capacity will be severely reduced for at least three days.
2: I can do little else on the same day and for one to two days afterwards.
3: I can do little else on the same day.
4: I must limit other activities on the same day.
5: This rarely affects other activities.
6: Unproblematic - does not affect other activities.

55 activities listed in categories:
A - Personal hygiene / Basic functions
B - Walking - moving around
C - Being upright
D - Activities in the home
E - Communication
F - Activities outside your home
G - Reactions to light and sound
H - Concentration
The scoring is the mean score for each category, so giving scores from 0 to 6 for each.

The purpose is for individual tracking and to communicate difficulties to clinicians and benefits agencies etc.
 
The ME Activity Questionnaire (MEAQ)

Currently in development. So far the initial version of the questionnaire is under way, with pwME filling it in twice two weeks apart.

Thread

From the information provided with the questionnaire:

The aim of this questionnaire is to measure activity levels, and ask about the adaptations you may make to manage your symptoms, and/or energy levels.

There are 97 questions in total. We realise this is a lot, but we want to capture the full range of people with ME/CFS’s abilities. We anticipate that the final version will be shorter and have separate scales for people who are mild, moderately and severely affected.
Click to expand...


Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)

Sample questions
12. Sit up in bed for approx. 30 minutes (NB. less than 30 minutes = an adaptation)
26. Focus on a cognitive task for approx. 30 minutes e.g reading or watching TV. (NB Less than 30 mins, or taking breaks = adaptation)
53. Take physical and/or emotional care of family members e.g. supervising homework, doing the school run, helping others wash and/or dress. (NB Less demanding activities = adaptation)
Click to expand...


  • Yes, I usually do this. It is not a problem.

  • Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities.

  • No, I avoid doing this so I can do other things.

  • No, I DO NOT/ CAN NOT do this

  • Not applicable. This activity isn’t relevant to me.
 
My aim with this thread is to focus on the way the questions are worded in each questionnaire and the options offered, not on the specific activities listed.

For the 4 PROMs I've listed above, these are the questions:

SF-36 PF
The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much?
Scores:
Yes, limited a lot
Yes, limited a little
No, not limited at all
_____________________________

WHODAS 2.0

In the past 30 days, how much difficulty did you have in....

0 = No Difficulty
1 = Mild Difficulty
2 = Moderate Difficulty
3 = Severe Difficulty
4 = Extreme Difficulty or Cannot Do
______________________

FUNCAP

0: I cannot do this.
1: My capacity will be severely reduced for at least three days.
2: I can do little else on the same day and for one to two days afterwards.
3: I can do little else on the same day.
4: I must limit other activities on the same day.
5: This rarely affects other activities.
6: Unproblematic - does not affect other activities.
_______________________

The ME Activity Questionnaire (MEAQ)

Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)

  • Yes, I usually do this. It is not a problem.

  • Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities.

  • No, I avoid doing this so I can do other things.

  • No, I DO NOT/ CAN NOT do this

  • Not applicable. This activity isn’t relevant to me.
____________________________
 
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In her talk yesterday, Sarah Tyson said, if I wrote it down correctly, that

FUNCAP focuses on the consequences of doing activities, whereas her questionnaire, MEAQ, focuses on the adaptations people make to decide to do or not do each activity.

My question I'd like to discuss is, which sort of question is most useful at capturing the limitations ME/CFS places on our daily function.
 
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What I find deeply confusing about the MEAQ is that it has so many overlaps. 'Adaptations' are factored into some of the activities listed, but are also included in one of the answer options. eg 'Sit up in bed for approx. 30 minutes (NB. less than 30 minutes = an adaptation)' and there's an option to answer 'Yes, but with adaptations...' Adaptations to the adaptation? Or then you can answer 'I limit how often I do it to enable me to do higher priority activities' OR 'No, I avoid doing this so I can do other things' - that's the same thing? Or if the point is to separate 'rarely' and 'never', then isn't 'never' also covered by 'I DO NOT' in the next answer option?

I cannot work out how I'm supposed to separate all those strands. Just trying to do it for one question hurts my brain, let alone dozens.

The FUNCAP is much simpler to my mind (and it takes account of the fact that sometimes choices and adaptations aren't under our control, so we sometimes have to take the consequences of an activity that we'd ideally limit or avoid. The MEAQ, despite all its extra verbiage, doesn't seem to allow for those cases.)
 
Trish said:
In her talk yesterday, Sarah Tyson said, if I wrote it down correctly, that

FUNCAP focuses on the consequences of doing activities, whereas her questionnaire, MEAQ, focuses on the adaptations people make to decide to do or not do each activity.

My question I'd like to discuss is, which sort of question is most useful at capturing the limitations ME/CFS places on our daily function.
Click to expand...

Thinking about this a bit more: the consequences of doing an activity are the direct result of how ill you are. Your decisions on how to adapt that activity or avoid it (if you can) are based on the consequences you've experienced and/or can predict from doing it, but also affected by other factors (like how much support you have). It makes more sense to me to measure the thing that's more directly connected to your state of health.
 
Trish said:
In her talk yesterday, Sarah Tyson said, if I wrote it down correctly, that

FUNCAP focuses on the consequences of doing activities, whereas her questionnaire, MEAQ, focuses on the adaptations people make to decide to do or not do each activity.

My question I'd like to discuss is, which sort of question is most useful at capturing the limitations ME/CFS places on our daily function.
Click to expand...
I feel like this opinion of Sarah Tyson is a red herring.

That's because FUNCAP is asking you to grade based on the past month. So is PROMS. so they are both asking whether you did/could have done *thing*.

Im a bit foggy but this seems like a semantics issue rather than say, an actual difference

Also, pwME - we usually think of the consequences before doing something.
 
The MEAQ seems to be looking for “avoidance” and use of “adaptations” yet the FUNCAP allows for avoidance.

Honestly the MEAQ feels like something was reverse-engineered from expected outcomes. FUNCAP feels like it looks into my soul.
 
Trish said:
Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities.
Click to expand...

This is too confusing to parse.

Adaptations could be considered separately at the beginning. As it is, I'd have to indicate repeatedly that my ability to do both essential and elective activities is always conditional on using a powered wheelchair, a wetroom with a shower chair, and a raised bed, chair and toilet. Specially as the computer could automatically adjust every relevant subsequent score to reflect this type of impairment, which doesn't vary at all over time.
 
I've been trying to sort out why I find the FUNCAP easy to understand and do, and a useful and accurate reflection of my capacity in each domain, and by contrast MEAQ so impenetrably difficult and ambiguous.

I think the problem for me is mainly this option in MEAQ:

  • Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities.
It takes no account of the frequency I can do the activity, the extent to which I can do it -sit for 3 or 30 minutes and so on - or the effect afterwards.
It seems to include all the options in FUNCAP apart from the two outer ones:
1: My capacity will be severely reduced for at least three days.
2: I can do little else on the same day and for one to two days afterwards.
3: I can do little else on the same day.
4: I must limit other activities on the same day.
5: This rarely affects other activities.
Click to expand...

I found myself rating almost everything on MEAQ as this category, or I can't do them, but all nuance is lost.

There's a world of difference between showering with a shower stool every day, score 5 on FUNCAP, and showering only on a good day, once a week or less and with assistance and laid low for days after, score 1 on FUNCAP.
Yet both are scored on MEAQ as yes with assistance. adaptation.
 
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12. Sit up in bed for approx. 30 minutes (NB. less than 30 minutes = an adaptation)
26. Focus on a cognitive task for approx. 30 minutes e.g reading or watching TV. (NB Less than 30 mins, or taking breaks = adaptation)
53. Take physical and/or emotional care of family members e.g. supervising homework, doing the school run, helping others wash and/or dress. (NB Less demanding activities = adaptation)
Click to expand...

Why categorise less than 30 minutes' activity as an adaptation? Nobody would call it that or understand it as such. Why not just 'no'?

As for the focusing on a cognitive task, it's a bit tone deaf given the number of neurodivergent people who'll have to fill this in. Some of them will always have struggled to maintain focus for 30 minutes, and still will if they recover from ME. Why not 'doing' instead of 'focusing on', and why not 'no' instead of 'with adaptations' if they can't?

And in the final question, how do people know how to identify which 'less demanding activities' are supposed to be categorised as an adaptation? Some people with ME don't have any; even breathing and swallowing are demanding.

[Edited for sense]
 
Kitty said:
Why categorise less than 30 minutes' activity as an adaptation? Nobody would call it that or understand it as such. Why not just 'no'?

As for the focusing on a cognitive task, it's a bit tone deaf given the number of neurodivergent people who'll have to fill this in. Some of them will always have struggled to maintain focus for 30 minutes, and still will if they recover from ME. Why not 'doing' instead of 'focusing on', and why not 'no' instead of 'with adaptations' if they can't?

And in the final question, how do people know how to identify which 'less demanding activities' are supposed to be categorised as an adaptation? Some people with ME don't have any; even breathing and swallowing are demanding.

[Edited for sense]
Click to expand...
Actually, point 53 is just bunkum “physical and/or emotional care such as supervising homework…”
Surely that’s a cognitive task
 
This mostly emphasizes how pointless creating another PROM really is. Most of the problems aren't with the questionnaires themselves, or even the questions, they're with acceptance and interpretation. They're so similar.

The SF-36 is the most standard one used, or one of the, and results from studies showing how low we rate are just ignored, disbelieved, or some mumbling about mental illness being serious mind-body-this-and-that, ignoring that there are dimensions to the SF-36 and they dispute that interpretation.

Medicine doesn't really accept episodic disability, so accounting for fluctuations won't matter. Its sometimes accepted, but very selectively, and poorly at that. And being in denial that there is even an illness such as ours makes that irrelevant anyway, they'll accept nothing that doesn't go with the standard vibe and mythology.

The questionnaires are really close to one another, not different enough that there are perfect combinations of words and answers that make one stand above the rest. For sure there is a hierarchy, some are better, but they're really bunched up and held back by the same limitations, most of which aren't in the questionnaires themselves.

Frankly the only thing we can do is point out how flawed their use is, and that they're more likely to do more harm than good. I don't see any problem with sticking with the SF-36, and advising patients to stop answering the ones that are used explicitly to frame everything as psychological. But it's not as if we can have much influence anyway. The whole field is stuck in a spiral of failure and has no capacity to even notice it.
 
Trish said:
I've been trying to sort out why I find the FUNCAP easy to understand and do, and a useful and accurate reflection of my capacity in each domain, and by contrast MEAQ so impenetrably difficult and ambiguous.

I think the problem for me is mainly this option in MEAQ:

  • Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities.
It takes no account of the frequency I can do the activity, the extent to which I can do it -sit for 3 or 30 minutes and so on - or the effect afterwards.
It seems to include all the options in FUNCAP apart from the two outer ones:


I found myself rating almost everything on MEAQ as this category, or I can't do them, but all nuance is lost.

There's a world of difference between showering with a shower stool every day, score 5 on FUNCAP, and showering only on a good day, once a week or less and with assistance and laid low for days after, score 1 on FUNCAP.
Yet both are scored on MEAQ as yes with assistance.
Click to expand...
Good example
 
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