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

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.

 

I'm glad there is a shorter version.

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

 

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:

 

The visible application available on mobile lets you take FUNCAP27

 

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'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.

 

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.

 

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.

 

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.

 

@Simon M see also this thread.

 

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

 

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

 

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

 

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.