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

This survey was quite difficult to complete, requiring a lot of going back and forth between the pages. It would have been easier if the evaluation questions had been placed straight after the section to be evaluated, not at the very end when I'd long forgotten what the sections to be evaluated actually contained.

And a pity they didn't allow extensive feedback. There was a lot I would have liked to say but there's only so much you can fit into 300 characters. In short, this proposed questionnaire shares some key problems with all the others we've analysed and discussed elsewhere on S4ME.

Is anyone here in contact with the authors and can point them to the S4ME discussions? We desperately need better questionnaires but while this proposed one has more relevant examples of activities than many others it still doesn't take into account the effect of pacing on symptom load and on PEM frequency and severity. Nor does it communicate (say to support service assessors) the difference between "can do once" and "can do repeatedly", and between "can do without PEM with the right sort of modifications" and "can do but will suffer PEM" and "can't do at all".

 

This is - so far - an informal project, and a work in progress.
We are not - at the moment - trying to make the perfect form. We are merely - for now - trying to make a sketch that can be shown to the Norwegian social services (NAV) among others, highlighting which areas ME-patients experience problems, and what other forms miss. We wish to show that existing forms (and we have looked at them) do not cover areas where ME-patients experience disability, nor do they cover PEM.
The goal is not to show each and every symptom, but how the level og disability that would be relevant to NAV
The little survey was just a first step in this process. Thanks to everyone who commented - around 250 persons - we have read everything, both on Facebook and in the survey, and have received much valuable input that we will use to make the next version. We have also received emails with loads of suggestions.

If anyone has ideas on the following, we would be grateful:

How would you phrase questions designed to show i PEM is present?
What would you ask, specifically, to show that OI is present?

 

I remember dr. Lucinda Bateman said in a lecture that she asks her patients how many hours a day they have their feet on the ground.

 

Do you have dizziness or distorted vision while eating?

 

Thanks for trying to tackle this very difficult task @trudeschei. I've been thinking about how to improve questionnaires for some time and it's not easy! Discussions spread over various threads here on S4ME show the same. In fact it's devilishly difficult to get this right.

Existing questionnaires have mostly been developed either for other conditions or are based on questionnaires for other conditions with only minor alterations. This leads to two key problems that I don't think can be solved with tinkering but which need some fundamental rethinking.

1) The example situations in existing questionnaires are often not relevant for ME. On this point the Norwegian draft is a welcome improvement. However, in some sections there were still big 'jumps' in functionality. One example I recall was distance walked, short distance up to 100m or longer distance above 100m (or something in that ball park, going by leaky memory). There's a big difference in function between being able to walk a few metres between rooms in the house and being able to cover 100m in one go which, with suitable planning and parking availability, may actually get you out of the house.

The problem with trying to cover all the levels of severity adequately is that this would make for a very long questionnaire. So I'm beginning to think we should have separate questionnaires for different levels of severity. It really makes no sense to ask the same questions of people who can still manage some employment as of people who are bedbound. One could start with a few questions for everyone to establish approximate severity (use the time-feet-on-the-ground concept?) and then, depending on those answers, direct people to fill in the section most appropriate for them.

2) Existing questionnaires don't account for the effects of PEM and pacing. This can lead to highly misleading results. The Norwegian draft attempts to address this with a couple of questions at the end asking about the nature of fluctuations and if the week asked about was typical, better or worse. I don't think this approach of separate questions is enough though. Yes, an ME-informed doctor may be able to use them to better interpret the answers to the other questions but the likes of welfare assessors would not know what to do with them. And in research, typically, questionnaires are just an exercise in counting ticks. So I think we need to rethink ME questionnaires from the ground up.

Below are some notes (with more questions than answers) I've been working on for some time - and they're very much a work in (slow) progress - but they may help start some useful discussions, so posting as is:

Things to keep in mind when asking about symptoms or function in pwME (as a replacement for function or disability scales; scales supposedly assessing mental health need to be addressed separately).

PEM, Pacing, the ability to do things once but not repeatedly, and general variability are major confounding factors and generally not understood by people outside the ME community (e.g. support service assessors). They are rarely considered in existing questionnaires making results difficult and ambiguous to interpret.

Be clear about the purpose of the questionnaire. Is it intended to track disease progress over time? Is it intended to show the differences between PEM and baseline function? Is it intended to give support service assessors an accurate picture of what a person can consistently do without worsening? Other? This partly determines to what degree questions need to be asked about how frequent something was actually done within what period of time and what is more generally doable at the current level of severity.

Is the questionnaire to be scored and if so how?

If asking about a specific time period (e.g. last week or last x month/s), establish first if the person was affected by PEM during this period, and to what degree they were able to pace. Without this information interpreting their answers about symptom load and function is meaningless.

If asking how many times a pwME did a certain activity in a given period, establish if the answer was by choice, by necessity, or due to irrelevance. PwME may choose to restrict a certain activity as part of their pacing. Or they couldn't do it that week because of PEM. Or they may be entirely unable to undertake the activity. Or they may have had no need to undertake the activity.

If asking about the frequency and severity of symptom or PEM similar considerations apply as answers may vary significantly with and without pacing. If not careful, answers will measure the ability of the pwME to pace effectively instead of the severity of their ME.

If asking about the frequency/severity of effects of sensory overload answers need to reflect the possibility that the pwME wasn't exposed to certain sensory triggers during the period whether by choice or good fortune, e.g. if somebody lives in a very quiet location they may not have had any problems with noise the previous week but that doesn't tell us what level of noise they would be able to tolerate.

Questions often become extra ambiguous because pwME adapt their activities so they can achieve them but not in a way a healthy person could. E.g. a pwME may well be able to prepare a full meal each day (tick yes?) - but only if they choose simple recipes, spread preparation out over the whole day, and drop other tasks to make room in their energy budget (tick no?).

Possible questioning strategy (needs work, go detailed first to ensure nothing is missed then pare back to most important to reduce number of questions):

Are you able to take a daily shower without incurring PEM and without making adaptations to achieve it (e.g. drop other essential activities of daily living that day, use a shower stool, use a bathrobe instead of towelling yourself dry, etc.)?

Are you able to take a daily shower without incurring PEM provided you make adaptations to achieve it?

Are you able to take a shower once every few days without incurring PEM provided you make adaptations to achieve it?

Are you unable to take a shower without incurring PEM even if you make adaptations to achieve it, but still shower on rare occasions and pay the price?

Are you unable to take a shower at all (e.g. because you're bedbound)?

 

Haven't been able to do any more work on this but one idea is worth recording (before I forget it again).

In summary, there are two main problems with existing questionnaires:

1. The activities, stressors, types and levels of function etc asked about are often a bad fit for ME.
2. The way the answers are rated, typically based on frequency or severity, which measures a combination of how bad your ME is conflated with how well you are able to manage it through pacing. It doesn't tell us which of those two factors has the bigger impact in an individual.

One way of overcoming the second problem would be to use the 'questioning strategy' from my previous post - but not for asking questions. Instead use the concept for rating the answers. Example:

Question: Are you able to take a shower?
Rating: select the best match from the options below

• I can do the activity at a normal frequency* and intensity without incurring PEM and without needing to make adaptations to achieve it.
• I can do the activity at normal frequency without incurring PEM provided I make adaptations to achieve it.
• I can do the activity at reduced frequency without incurring PEM provided I make adaptations to achieve it.
• I can do the activity but even with adaptations I always incur PEM.
• I can't do the activity at all (e.g. because bedbound).

*normal frequency" means what a healthy person could do, e.g. shower daily, walk up stairs several times/day, etc

This would give a better picture of where people are at than existing questionnaires, especially for purposes like applying for benefits.

It still doesn't address the issue of people swapping out activities for one another to avoid PEM due to cumulative exertion, e.g. shower or meal prep but not both on the same day. More head-scratching...

 

I have not read this because it's in Norwegian but still have opinions on questionnaires. Where all questionnaires fail is

1) they appear to be designed for disability that is independent of activity levels, like no longer having legs.
2) they consider each activity in isolation, while in reality activities draw from the same energy reserves

If I'm asked whether I can do certain activities, the answer is always yes. But I cannot do them every day, or do all of them on the same day, or maintain adequate quality of life while doing them. There is a marked reduction in ability to carry out a certain AMOUNT of activities OVER TIME. If I'm asked whether I can do activities at all, in isolation, I would probably be falsely classified as having little or no disability. Some questionnaires like the SF-36 are ambiguous with respect to the ability to sustain activities over time, that is, the answer is open to interpretation by the patient.

A ME/CFS specific questionnaire also needs to take into account that good pacing might lead to low frequency and severity of PEM at the cost of missing out on the ability to do useful and interesting activities.

A good questionnaire might consist of just a few questions, because it's not very useful to ask about specific activities when the limitation is largely NOT ACTIVITY SPECIFIC. A person that has lost their legs can do certain activities with no impairment, but those requiring legs are problematic. This is an example of activity specific impairment and not the type of problem I have. My limitation is in the QUANTITY of ACTIVITIES that can be carried out over time, without excessively compromising quality of life.

 

The survey is currently closed?

 

Looks like it. It says "currently closed" and to contact the creator of the survey for further assistance.

@trudeschei may know more?

 

Sorry for the late answer, I am not on this forum that much - too many things to keep track of, at times, and having a bad period, ME wise.

We asked members of the Norwegian Association's Facebookgroups to evaluate first one version of the form. Then we looked at the 400 answers and comments, revised the form, and asked the group members to evaluate it again. 500 people did, and we are currently going through that batch of answers and comments. We seem to be getting closer to something that is useable - where patients feel they can give an accurate picture of their level of functioning, and that is fairly short and concise - but there is still some revision to do.

We are also trying to develop a scoring system that will really show where there is disability - for some ME-patients sound and light sensitivity alone are disabling, for other POTS is one of the worst problems. Since one of the proposed uses of this for is for social services to evaluate patients when it coems to benefits, it is important that a form catches "deal brakers", if you understand what I mean?

We are working!

 

If anyone wants to send me ideas or comments on the subject, they are gratefully received
My email is: trude.schei@hotmail.com

 

Much appreciated. Getting some fit for purpose questionnaires is so important. Look after yourself though, sorry to hear you're going through a bad ME period

 

Great presentation about the development and continuing refinement and testing of this new questionnaire. Looks very promising @trudeschei.

Unfortunately for most of you here it's all in Norwegian and no subtitles. But the drawings are great so I put a screen grab of one self-explanatory one below the video. The question at the top is Can you walk 1km? No prizes for guessing which of the two is the pwME.

https://www.youtube.com/watch?v=-xoB7ZBOu7w

 

A brief summary of the main points of the Norwegian presentation linked in the previous post.

The reason for creating the questionnaire is to give NAV (the Norwegian agency responsible for assessing eligibility for welfare payments) a better tool to assess pwME's level of function.

Existing tools were deemed unsuitable. For example, some primarily assess symptom load but what's needed here is assessment of function. Others don't cover relevant types of reduced function (e.g. problems being upright) and ask questions of the "Can you...?" type without taking into account subsequent PEM or the effect of cumulative exertion.

A new questionnaire was created and tested by about 500 pwME. Their feedback was incorporated into a second version. This was again tested by about 500 pwME and their feedback used to further refine the questionnaire. This third version was tested by 536 pwME plus 366 healthy people plus 109 people without ME but with other conditions affecting function. Further testing and refinements ongoing - so this is not the final version - but the analysis of the third version testing shows it's getting somewhere useful. The slide below is an excerpt only so not meant to cover everything, just to illustrate that this questionnaire clearly separates between the 3 groups, and just how low pwME rate their function.

Additionally they tried to see if the responses would allow separating pwME into degrees of severity of limitations. This worked quite well, too.

Also, the questionnaire is structured to capture different domains of function separately and that turned out to be important because it allows it to capture that some people were extremely limited cognitively but less so physically whereas others were the other way around or were most limited by sensory overload or by OI.

Translation of the slide demonstrating separation between 3 groups is below the slide.


Questions asked are what happens if people attempt the following

• Prepare a 'complicated' meal from scratch (more than... cut off on slide)
• Go for a longer walk, above 1km, mostly flat
• Concentrate on a task for at least 2 hours
• Heavier activity e.g. wash floor/vacuum at least 1/2 (hour? cut off on slide)
• Attend cinema or concert with high sound level or equivalent... (cut off on slide)
• Go for a longer walk, more than 1km, hilly or rugged terrain
• Participate in dinner party, party, or large family get-together
• Physical activity with high pulse rate 15min
• Do organised leisure activities
• Train at high pulse rate approx 1/2 hour
• Concentrate for a full working day (office job)

Scoring system is as follows

• 0 can't do this
• 1 I experience serious deterioration
• 2 I can't do anything else that day and the following day(s)
• 3 I can't do anything else that day
• 4 have to reduce other activity the same day
• 5 occasionally affects other activity
• 6 unproblematic, doesn't affect other activity

Grey: pwME
Orange: pw other function-limiting conditions
Blue: healthy

 

@trudeschei, are you looking at writing up a paper for publication about the process of developing this questionnaire? I think that would be worthwhile project (not necessarily for you personally if you have too much on your plate, but someone on your team or maybe some Masters student) so people in other countries can see what can be achieved.

And are you considering making the final version available for others to use? Allow adaptation to local conditions?
If so, under what conditions? You are putting a hell of a lot of work into this so it would be only fair to expect a small contribution of some sort from anyone wanting to use it. But that would have to be done in a way that it doesn't hinder it being used as widely as possible to replace some of the unfit for purpose questionnaires out there

 

This would be very useful for gov't agencies around the world once translated. Even in the United States, we don't have a specific listing for ME/CFS. On advocacy task I'd like to see is campaigning for one. A listing that would automatically approve people if PEM significantly limits their activities. You don't need to have a listed condition to get disability here, but it can make it faster/easier.