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

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

 

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.

 

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.

 

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:

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

Sample questions

• 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.

____________________________

 

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.

 

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. adaptation.

 

Good example

 

SPF. Define a lot, define a little?