Assessing Functional Capacity in [ME/CFS]: A Patient Informed Questionnaire [FUNCAP], 2024, Sommerfelt et al

[trudeschei]

The whole process started because Norwegian welfare authorities (Nav) asked a national fatigue network to recommend a form that could be used to assess functional capacity in patients too ill to participate in normal activities used to assess capacity (or lack therof) for work. Both Kristian Sommerfelt are members of the network, and when we looked at existing forms, we both said: "It MUST be possible to make something better!"
We really hope this will held doctors write better descriptions of patients' functional capacity, and perhaps prevent that the majority of patients being made sicker by Nav trying to find out what the can do, and "treating" the with rehabilitation, CBT and exercise.
As we worked, we also realised that the form would be useful in diagnosis, to see if the aptient had PEM - and that it also may be useful in research.
FUNCAP is not perfect - and in the future it may be changed. We are hoping to get feedback from people using it - both patients, doctors, Nav and researchers, to see how it can be made even better. Still we wanted to get it out there now, so that people can start using it - since we think it is better by far than what exists.
The national guidelines in Norway are being revised at the moment, an we very much wanted it to be published, so it could be considered in that process.

 

[Trish]

Well done with getting it all the way to publication. I think it's a very valuable resource.

 

[Snow Leopard]

I'm glad there is a shorter version.

Is there a version of https://raffbenato.github.io/funcap55/ for the FUNCAP27?

 

[Simon M]

I think this is excellent:

• piloting through multiple versions,
• testing on a wide range of severities,
• covering a broad range of functioning from personal care to more physical and eg concentration,
  
• and with no floor or ceiling effects.

Fig 1 (below) shows the range of scores across severities and by function type:

 

[Yann04]

Is there a version of https://raffbenato.github.io/funcap55/ for the FUNCAP27?

The visible application available on mobile lets you take FUNCAP27

 

[MelbME]

We're interested in assessing this questionnaire's ability to assess someone "right now" or "within the last 1-2 day period' as opposed "average day of the last month".

What do people here think of its applicability on that short time period?

 

[Hutan]

It's great to hear of the use of FUNCAP by ME/CFS researchers.

I think a 1-2 day retrospective period would require very clear instructions and checking that people understand. The answers are based on a sort of assessment of average capability. If you get very specific about a short time period e.g. the last 48 hours, it is going to be easy for people to confuse what you are asking with 'did you do this particular thing?' or 'could you have done this particular thing as well as what you already did' rather than 'could you have done this particular thing, ignoring anything you actually did'?

e.g. "showering standing"

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.

So, could you have taken a shower, even though you didn't, and ignoring the fact that yesterday wasn't a shower day because that is the day you fold the laundry. Or ignoring the fact that you did take a shower because it was shower day, and so it didn't affect other activities because no other activities were planned. I'm not saying it's impossible to answer accurately, just that, when the time period is short and very recent, it's easier to answer incorrectly.

I think the 'right now' question is probably easier than 'the last two days'. e.g. 'given your current condition right now, rate your capacity to do these activities'. The future focus makes it clearer that these situations are hypothetical.

Rating 5 'This rarely affects other activities' is a bit tricky because it is a frequency assessment, seeming to relate to the past , whereas with a 'right now' time frame it would probably be easier to think about as a future probability assessment e.g. 'This is unlikely to affect other activities'.

There is the problem of capacity varying during the day. There are often times in a day when I can't do something, but can later in the day, maybe after a rest or sleep. For example there would be times when I would answer about 'showering standing' '0- I cannot do this', even though my normal rating is '4- I must limit other activities on the same day'. That's the draw back of a 'right now' assessment.

Uh, that got more complicated than I expected and I ran out of brain power part of the way through. Hope there is something useful in that.

 

[Trish]

We're interested in assessing this questionnaire's ability to assess someone "right now" or "within the last 1-2 day period' as opposed "average day of the last month".

What do people here think of its applicability on that short time period?

Interesting question. I think FUNCAP asks for an average day over the last month, so it enables a sort of overview of our current state of health/function as we recall it over the last month. For some, that will have been a roller coaster of awful, bad and less bad days, for others it will have been a fairly steady state, but for both of these groups it enables ironing out the highs and lows and looking at the general state of health, allowing comparison with, say, a year ago.

If you ask for just a couple of days, they may happen to be at one or other extreme so not representative of current state, and if you catch people on the cusp of a PEM episode they may have had one OK and one very bad day in the last 2 days.

I think it depends what the intention is, and how often you are asking people to fill it in. If a person is well enough to fill it in daily, perhaps the shorter version, then it might be very good for picking up fluctuations to see how stable or unstable the person's functional capacity is. I think if you were doing daily FUNCAP, you would want to see how it correlates with daily symptoms and actual physical activity using wearable monitors.

I would like to see a study using a range of daily measures including all the information that can be gleaned from wearables and a short daily version of FUNCAP and symptom scales so we can see which provides the most useful information both for helping pacing and for outcome measures for clinical trials.

It would be too much to ask of people with very severe ME/CFS, so would need to have major adaptations for severity levels. There's no point, for example, asking whether someone with very severe ME can do a lot of the things in FUNCAP, so they would have a much shorter version that could if necessary be filled in by a carer.

 

[SNT Gatchaman]

I've got an early version of an iPhone app working. At the moment I've just roughly eye-balled the paper's graph to get the boundary conditions between eg mild and moderate, but that should probably be brought into line with the actual data.

At the moment the app is single-shot, so doesn't record a historical record. However, that might be something to do, perhaps tied in to journaling as well as on-board health metrics, such as HRV, daily steps etc. If anyone is interested in working on this, please flick me a DM.

 

[MelbME]

It's great to hear of the use of FUNCAP by ME/CFS researchers.

I think a 1-2 day retrospective period would require very clear instructions and checking that people understand. The answers are based on a sort of assessment of average capability. If you get very specific about a short time period e.g. the last 48 hours, it is going to be easy for people to confuse what you are asking with 'did you do this particular thing?' or 'could you have done this particular thing as well as what you already did' rather than 'could you have done this particular thing, ignoring anything you actually did'?

e.g. "showering standing"

So, could you have taken a shower, even though you didn't, and ignoring the fact that yesterday wasn't a shower day because that is the day you fold the laundry. Or ignoring the fact that you did take a shower because it was shower day, and so it didn't affect other activities because no other activities were planned. I'm not saying it's impossible to answer accurately, just that, when the time period is short and very recent, it's easier to answer incorrectly.

I think the 'right now' question is probably easier than 'the last two days'. e.g. 'given your current condition right now, rate your capacity to do these activities'. The future focus makes it clearer that these situations are hypothetical.

Rating 5 'This rarely affects other activities' is a bit tricky because it is a frequency assessment, seeming to relate to the past , whereas with a 'right now' time frame it would probably be easier to think about as a future probability assessment e.g. 'This is unlikely to affect other activities'.

There is the problem of capacity varying during the day. There are often times in a day when I can't do something, but can later in the day, maybe after a rest or sleep. For example there would be times when I would answer about 'showering standing' '0- I cannot do this', even though my normal rating is '4- I must limit other activities on the same day'. That's the draw back of a 'right now' assessment.

Uh, that got more complicated than I expected and I ran out of brain power part of the way through. Hope there is something useful in that.

The variation in the day is why I'd like to use it "right now". I think the FUNCAP might be influenced by how someone is feeling "right now" anyway, maybe not completely but I'd say it would be a factor. I like the idea of perception of consequence to doing activity as a measure of how someone feels in a moment.

I'm interested in "right now" and I like the way they asked the questions in FUNCAP. You're right, "rating 5" is a bit awkward and I appreciate your suggestion of the change.

 

[NelliePledge]

You’d probably need to do it 2 or 3 times a day to capture the variability

I am one of the people who start off at my worst level of functioning and am at my best later on. Assuming I’m only pottering around the house that is. A big activity especially outside home will immediately affect my capacity so I would be worse later than before going out.

 

[NelliePledge]

That looks a good project @SNT Gatchaman i don’t have skills to help but good luck

 

[MelbME]

Interesting question. I think FUNCAP asks for an average day over the last month, so it enables a sort of overview of our current state of health/function as we recall it over the last month. For some, that will have been a roller coaster of awful, bad and less bad days, for others it will have been a fairly steady state, but for both of these groups it enables ironing out the highs and lows and looking at the general state of health, allowing comparison with, say, a year ago.

If you ask for just a couple of days, they may happen to be at one or other extreme so not representative of current state, and if you catch people on the cusp of a PEM episode they may have had one OK and one very bad day in the last 2 days.

I think it depends what the intention is, and how often you are asking people to fill it in. If a person is well enough to fill it in daily, perhaps the shorter version, then it might be very good for picking up fluctuations to see how stable or unstable the person's functional capacity is. I think if you were doing daily FUNCAP, you would want to see how it correlates with daily symptoms and actual physical activity using wearable monitors.

I would like to see a study using a range of daily measures including all the information that can be gleaned from wearables and a short daily version of FUNCAP and symptom scales so we can see which provides the most useful information both for helping pacing and for outcome measures for clinical trials.

It would be too much to ask of people with very severe ME/CFS, so would need to have major adaptations for severity levels. There's no point, for example, asking whether someone with very severe ME can do a lot of the things in FUNCAP, so they would have a much shorter version that could if necessary be filled in by a carer.

I think the nice thing about FUNCAP is the split into domains that you could focus on in a shortened survey.

I am wanting to get wearables, FUNCAP right now, symptoms tracker and biofluid collectors to capture patients on a good day, a bad day, entering PEM and during PEM where possible. I think I could get it to 100s of patients. Might be $500 a person for metabolomics over 4 days for 2 biofluids.

 

[Simon M]

I've got an early version of an iPhone app working. At the moment I've just roughly eye-balled the paper's graph to get the boundary conditions between eg mild and moderate, but that should probably be brought into line with the actual data.

At the moment the app is single-shot, so doesn't record a historical record. However, that might be something to do, perhaps tied in to journaling as well as on-board health metrics, such as HRV, daily steps etc. If anyone is interested in working on this, please flick me a DM.

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Do you are developing an iPhone app?!

Seriously impressive, and I don’t recall seeing anyone do that on the Forum before. Thanks. It seems like a great way to extend the tools/research. And above all, to bring people with ME into the process.

 

[SNT Gatchaman]

@Simon M see also this thread.

 

[MrMagoo]

Can I just repeat what I said elsewhere, other questionnaires are like “meh” whereas I feel like FUNCAP looks into my soul!

 

[RedFox]

We're interested in assessing this questionnaire's ability to assess someone "right now" or "within the last 1-2 day period' as opposed "average day of the last month".

What do people here think of its applicability on that short time period?

I think you might need another questionnaire for that.

 

[MelbME]

I think you might need another questionnaire for that.

There isn't any really though, it's a serious need to have validated 'right now" scales

 

[bobbler]

You’d probably need to do it 2 or 3 times a day to capture the variability

I am one of the people who start off at my worst level of functioning and am at my best later on. Assuming I’m only pottering around the house that is. A big activity especially outside home will immediately affect my capacity so I would be worse later than before going out.

Agree. And the irony to bear in mind is that for me writing an email or having to answer a direct question I haven’t yet pondered is huge as a task - that needs to be borne in mind if using the survey in this manner

there probably are ways to reduce load as @Trish nited with getting rid of chunks of questions that are all ‘beyond ability’ either due to level or at that point (ie if in PEM you can ‘strike out’ a whole chunk in one go of the more ‘only on a good day’ stuff with a no answer together)

and ways to reduce the cognitive load in thinking what the answer is to those left could also be worked on. Ie getting instructions and what the thought experiment is nailed as easy by involving those who are most ill as to what starts becoming hard to answer vs top of head easy to provide

otherwise of course your measuring tool is in itself causing exertion affecting results

today I’m flat on my back. I’m ok writing here (nearly said talking because it’s casual but that would be physical exertion adding a further level that I’m not doing today so this is my ‘chatting’) as long as I can circumnavigate and say what comes to me. I’d be stuffed and it would really hurt and drain (and if probably just give an answer because social pressure eventually means you have to give something) if it were a direct question. A complex direct question even worse. A ‘layered’ direct one , worse agsin .

I’m always surprised how few people understand these cognitive levels (sarah Tyson seems particularly bad). In market research you have to be aware just due to misreading and chance normal people won’t be bothered to answer or read properly. Yet we get handed some corkers guven when mental exertion and trying to think ‘how do I feel’ involves

 

[SNT Gatchaman]

It would be too much to ask of people with very severe ME/CFS, so would need to have major adaptations for severity levels. There's no point, for example, asking whether someone with very severe ME can do a lot of the things in FUNCAP, so they would have a much shorter version that could if necessary be filled in by a carer.

there probably are ways to reduce load as @Trish nited with getting rid of chunks of questions that are all ‘beyond ability’ either due to level or at that point (ie if in PEM you can ‘strike out’ a whole chunk in one go of the more ‘only on a good day’ stuff with a no answer together)

Great idea @bobbler and @Trish.

I'll add this to the app: to auto-fill (and hide) functions that wouldn't be relevant for pre-declared severe people. I'll post some screenshots later in the day, if I can get it to work satisfactorily.

And again if anyone wants to beta test this on their iPhone, just send me a chat message. It's a relatively painless process, using Apple's TestFlight app, which is like a dedicated App Store to test apps that aren't permanent, instead expiring after 3 months.