Measuring Functionality

[Cort]

Here are two sets of Functionality Questions provided by Dr. Jason and Dr. Hartz Please provide Suggestions for Edits/Additions BELOW the these sections - do not directly edit the authors questions. Thanks

Hartz

Questions about your health and ability to function

INSTRUCTIONS: This questionnaire asks about your health. This information will help keep track of how you feel and how well you are able to do your usual activities. Please answer every question by marking one number. If you are unsure about how to answer, please give the best answer you can. You do not need to answer any questions that you feel uncomfortable answering.

15. In general, would you say your health is: Excellent 1
Very good 2
Good 3
Fair 4
Poor 5


16. 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?

Yes, limited a lot
Yes, limited a little
No, not limited at all

Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf 1 2 3
Climbing several flights of stairs 1 2 3

17. During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health?

Yes No
Accomplished less than you would like 1 2
Were limited in the kind of work or other activities 1 2

Jason

78. Which statement best describes your fatigue/energy related illness during the last 6 months? (Check one)
 I am not able to work or do anything, and I am bedridden.
 I can walk around the house, but I cannot do light housework.
 I can do light housework, but I cannot work part-time.
 I can only work part-time at work or on some family responsibilities.
 I can work full time, but I have no energy left for anything else.
 I can work full time and finish some family responsibilities but I have no energy left
for anything else.
 I can do all work or family responsibilities without any problems with my energy.

88. In the past 4 weeks, approximately how many hours per week have you spent doing:

• Household related activities? hours per week
• Social/Recreational related activities? hours per week
• Family related activities? hours per week
• Work related activities? hours per week

89. In the past 4 weeks, have you had to reduce the number of hours you previously spent (prior to your illness) on occupational, social or family activities because of your health or problems with fatigue/energy?
 Yes  No (Skip to Question 90)

89b. Before your fatigue/energy related illness, approximately how many hours did you used to spend on:

• Household related activities? hours per week
• Social/Recreational related activities? hours per week
• Family related activities? hours per week
• Work related activities? hours per week

90. Please rate the amount of energy you had available yesterday, using a scale from 1 to 100 where 1 = no energy and 100 = your pre-illness energy level
91. Please rate the amount of energy you expended (used) yesterday, using a scale from 1 to 100 where 1 = no energy and 100 = your pre-illness energy expended
92. Please rate the amount of fatigue you had yesterday, using a scale from 1 to 100 where 1 = no fatigue and 100 = severe fatigue
93. For the past week, please rate the amount of energy you had available using a scale from 1 to 100 where 1=no energy and 100=your pre-illness energy level
94. For the past week, please rate the amount of energy you have expended (used) using a scale from 1 to 100 where 1 = no energy and 100 = your pre-illness energy expended
95. For the past week, please rate the amount of fatigue you have had using a scale from 1 to 100 where 1 = no fatigue and 100 = severe fatigue

VERNON

The following items are about activities you might do during a typical day. Does your health now limit you in these activities and if so, how much? Check the appropriate box

Yes limited a lot Yes limited a little No not limited at all

• Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
• Lifting or carrying groceries
• Climbing several flights of stairs
• Climbing one flight of stairs
• Bending, kneeling, or stooping
• Walking more than a mile
• Walking several blocks
• Walking one block
• Bathing or dressing yourself

During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of your physical health? Yes No

• Cut down the amount of time you spent on work or other activities
• Accomplished less than you would like
• Were limited in the kind of work or other activities
• Had difficulty performing the work or other activities (for example, it took extra effort)

During the past 4 weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)?

Yes No

• Cut down the amount of time you spent on work or other activities
• Accomplished less than you would like
• Didn't do work or other activities as carefully as usual

During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal
social activities with family, friends, neighbors, or groups?

____ Not at all ____ Slightly ____ Moderately ___ Quite a bit ___ Extremely

 

[awol]

I think in most of these questions on functionality, FAR too much emphasis is placed on physical limitations.

Physical impairment is an important factor for many of us, but not all of us. Provided I am well rested, I do not have obvious physical disability. I am, however, SEVERLY impaired in my work because my brain does not function. Therefore, if asked how much capacity for physical labor I have, my answers will make it seem like I am reasonably healthy. However if asked about my ability to read a book, to learn things and absorb contextual information, my ability to analyze, or about sensory overload it would become quite clear just how severely impaired I actually am.

 

[dean]

For me this process is periodic. Sometimes the problem is switched on and the again switched off without any apparent reason. When I am under attack I am a completely different person than I am when I am OK. I was sick for years when it first struck and then it went away. In fact for years I was symptom free except for occasional bad days or weeks. Last year it came back for about 4 weeks and now it is back again, althought there are now symptom free days..... Some days it can come and go within hours,

So...the problem with the approach to functional capacity with these questions is that what I answer on one day, would be completely different than what would be answered another day. The past four months can be different than some other four months. I think that we can get at the question of periodicity with these questions, but they might not get at levels of real dysfunction actually caused when we are ill...

I think the questions have to be rethought to deal with this aspect of our thing....

 

[awol]

I agree with dean. Functional cycling is important too.

 

[awol]

It's a start...the list is getting a bit clumsy to look at though. Could we start merging into a single format and getting rid of particular doctors' formats?

Also 3 sections needed. First for capacity for physical activity. Second for cognitive capacity. Third for progression of symptoms and symptom cycling - maybe a pattern of disease progression could become clearer?

 

[Cort]

I agree with dean. Functional cycling is important too.

I agree with dean. Functional cycling is important too.

Lets do it guys. This is exactly how community input is so important. We need to come up with a question clarifies functionality and prognosis.

How about this:

Cycling:
I have not experienced large fluctuations in my functional capacity; while I may have gotten better or worse over time, the fluctuations in my health generally occur gradually - yes/no...if yes continue to next question

Relapse/Rebound Questions - these questions are for people who have experienced startling changes in their functionality over time.

• I regularly experience very large fluctuations in my functional capacity over a 24 period
• I regularly experience very large fluctuations in my functional capacity on a weekly basis ie some weeks I have felt much, much better and some weeks much, much worse
• I've experienced very large fluctuations in my functional capacity on a monthly basis - some months I felt much, much better and some months I felt much, much worse
• I've experienced very large fluctuations in my functional capacity on a yearly basis - since I was diagnosed with CFS there have been years in which I felt much, much better and/or much, much worse

In the past I have been quite healthy or nearly well for significant periods of time (eg several months)

Since you were diagnosed with CFS have you ever felt

• that you were well or nearly well?

If you did feel that you were well or nearly well, how long did that period of wellness last

• Less than a month
• A month - 6 months
• 6 months to a year
• 1-5 years
• Over 5 years

What is your current activity level now? (Use a chart for this)



What do you believe triggered these dramatic fluctuations in your health?

• Treatment
• Altered Activity levels
• Financial Stresses
• Emotional Stresses
• Don't Know

 

[awol]

looking good. Under the last bit I would add a bullet point for immunological stress. Very very important. Both major deteriorations in my condition were after vaccination.

 

[Cort]

I just created a new page focused just on Relapse/Rebound questions. I think its very important to capture who, for whatever, reason, experience large fluctuations in their health. I will add infection to it.

Here's the location of the new page; http://www.forums.aboutmecfs.org/showwiki.php?title=Patient+Data+Repository+and+Treatment+Review+Project:Relapse+Rebound+Questionnaire

 

[willow]

FAR too much emphasis is placed on physical limitations.

I am impaired physically, but my most limiting impairments are equally cognitive, sensitive and neuro. Can we fit these last 2 in anywhere?
For example a vibration, sound or another's movement can cause immediate physical collapse or partial paralysis.

 

[Marco]

Firstly, I can appreciate why Cort started this thread with existing questionnaires - an entirely sensible place to start.

I am also acutely aware of the need to use standardised instruments to capture measures such as functional capacity, pain etc. If we are to hope that researchers are to use this database then they need to be able to quote standard measures for comparison purposes. I'll return to this.

The problem with using pre-existing instruments is that they rarely capture what this illness is all about. As already stated , there is far too much emphasis on physical activities, tolerance for exercise etc and not enough on cognitive fatigue and the interaction between physical and cognitive effort and symptoms. Plus the standard instruments often fail to capture the dynamics of push and crash.

I suspect one reason the existing instruments are inadequate is that they themselves drew on other existing scales -probably drawn up to measure functional capacity in 'physically disabling illnesses'. Another reason is perhaps that the researchers are following a particular line of enquiry (pain, fatigue etc) and fail to capture the whole picture as a result.

The key point I'd like to make is that this database if OUR opportunity to capture data that properly refects how the illness affects us. This does not necessarily rule out also using a standard measure for comparison purposes.


Just by way of illustration, UK forumites will be aware that Incapacity Benefit is the UK state benefit paid to those currently unable to work due to illness. Receipt of Incapacity Benefit is regularly reviewed and the first stage is that the patient completes a 20 page (largely tick box) questionnaire which is then countersigned by their GP who adds their own notes on diagnosis and incapacity.

I've just completed one of these forms. The form asks questions on your capacity to walk certain distances, sit or get up from a chair, lift, stand, reach, carry, see, hear, speak etc. The only reference to cognitive abilities is whether of not you suffer from 'fits or similar' and there is a single question on whether or not you suffer from any 'mental illness' that may cause anxiety, depression etc. So the capabilites test is heavily weighted towards the physical.

You are encouraged to complete the form with your 'worst day' in mind as this obviously places a limiting factor on your ability to work, and to consider if any of the activites cause pain or discomfort.

This all seems reasonable. So I filled the form in, considering my worst days (in full crash) and recorded that I could not walk, stand, sit, lift, carry, speak etc at all.

This causes me two difficulties

(a) I'm aware that anyone seeing me out grocery shopping on a good day would not recognise this description even though, unknown to them, that may be all I can do that day. But I'm still not comfortable with the 'cognitive dissonance' of the discrepancy myself;

(b) Regardless of the patient's comments and their own GP's comments, the vast majority of Incapacity Benefit claimants will be sent to an 'independant' doctor who will assess their capacity against the responses given on the questionnaire. The very fact that I attend the apppointment means I'm not in mid-crash and therefore, in all likelihood, will be able to walk, stand, reach, talk etc with no apparent difficulty. The examining doctor will have no idea the extent to which I've had to compromise my activities beforehand to ensure that I keep the appointment, nor the extent that I'm compromised afterwards.

As a result, I've had to draft an extensive document, explaining that the form does not allow me to accurately document my illness, and setting out in detail my medical history, symtoms, effects on daily capacities, the fluctuating nature of the illness etc.

Completing a relatively simple, largely tick box form, has now taken me a month, working on it almost exclusively and has caused a number of relapses that have set me back quite significantly.


Apologies for the lengthy digression but I hope it makes the point.

What I would suggest is that we need our own scale that measures both physical and mental acitivities/capacities; that captures the impact of these activities and that describes capacities on a good and bad day.

Perhaps someting along the lines of

(a) A list of physical and mental activities and the degree to which you can carry them out on a good day;
(a) linked to these a further question that asks - does continuous or repeated carrying out of these activities make your symptoms - much worse, moderately worse, a little worse, no effect, a little better???
(c) The same list of physical and mental activites and the degree to which you can carry them out on a bad day.

From this you could derive measures which cover high and low capacity and the deficit caused by over-exertion.

These measures could be used alongside a simple standard instrument (hopefully one validated for ME/CFS) to give each respondent a standard rating for comparison to other studies plus a more sophisticated rating. In fact comparing the ratings from the two instruments, against each other and against symptom severity might be an interesting little piece of research.

Obviously, this requires a lot more thought, but, as I said, its our opportunity to really capture a complete description of the illness which is not compromised by others expectations or biases.

 

[rhiannon]

Moderate activities, such as moving table, vacuuming, bowling or playing golf sound a bit random, don't they? (Hartz 16). How many hours doing something is always difficult to answer and probably would be an inaccurate estimation, in my opinion. (Jason 88)

Activities such as driving, working on the computer, reading, writing, talking to people, sitting upright, standing, etc are more relevant to ME.