Patient led measure of outcomes

[Adrian]

An interesting idea. Sentiment analysis of free form descriptions by people of how they are?

It would require testing each LLM is different and its not something I've tried but generally I've found summarization really good - but on technical topics - and I'm only using small language models (~3 to 8b params) that I can run on my laptop.

 

[hotblack]

It would require testing each LLM is different and its not something I've tried but generally I've found summarization really good

Me too. But I’ve not got any experience with deeper analysis. Although know its used in quite a few areas.

Definitely interesting and could be good when there is lots of data from different sources to analyse too. It would be a lot more work to administer than what I was thinking, which was going for absolute minimum data and effort by everyone involved. Two different but potentially very valid approaches though.

 

[Kitty]

- Would picking 5 descriptors from Funcap 55 be easier/better than completely patient created descriptors or are these too restrictive?

I'd say the usefulness of personalised descriptors is that they're things you actually do, not things you have to imagine whether or not you could do.

Things you're motivated to do, either because they're a bodily need, or you do them every day because they've become a habit or you really enjoy them. Or things that need doing, and if you don't do them they either get added to the load of someone else in the household, or the omission impacts your dignity or quality of life (e.g. not changing bedding as often you want to).

So you start with things the person does every day unless something unusual happens. Every day is important, because it's an indication of their base level of functioning. How many days this week did they do them?

Then a couple of things they'd only expect to be able to do once a week or so because they trigger PEM. How often did they do them?

Then things they'd really like to be able to do, but can't without making themselves really unwell. Perhaps a couple of pre-specified things, and one option left blank for something they hadn't thought of. Have they done any of them?

They should all be the things of ordinary life: eating, toileting, catching up with online news/social media, listening to music, washing hair, dealing with laundry. The ambitions need to be ordinary as well, e.g. staying out of bed most of the day, meeting up with someone outside the house, doing a trip away from home.

It might be challenging to explain all this, but it's important to get away from the theoretical ability to do things as much as possible. If trial participants really want a treatment to be working, they're more likely to overestimate their capacity to do theoretical activities. The focus needs to be on things they actually did and how often they did them, because that will show whether they had more, less, or roughly the same capacity.

 

[Kiristar]

Some questions I have, and am unsure of the answers, would appreciate feedback

- Would picking 5 descriptors from Funcap 55 be easier/better than completely patient created descriptors or are these too restrictive?
- Should he question be can you do these things without significant negative impact? Or comfortably at the time? Or just did you do these things? How important is it to capture negative knock ons? Or would these simply reduce how often you did things so be captured by frequency measure?
- I like the idea of the patient measuring these 5 things weekly, it’s easy enough to then do a monthly total, what do people think? Would monthly work better or less well?
- Would we need the daily or weekly good/bad/average measure too? Does this give us extra useful data or is it too much to record?

Maybe we can organise our own trial of this framework? I could see people using whatever method they prefer, a spreadsheet or just a piece of paper. And not sharing any data but sharing what they like or don’t like, what works or doesn’t work, etc.

There’s no intervention to test, but we could learn how to best make the framework/process to work for different people. If we can get something that works for patients maybe some researchers would take it up?

I am severe and very foggy. The cognitive effort of having to develop my own questions and scales would be too hard for me. I can't even remember things over a week either same day is challenging.

I stopped visible as symptoms tracking was too onorous.

I know it doesn't work for everyone but the only outcome thing I track now is hrv trend and then 1 symptom ("did I have a bowel movement" and that only out the desperate need to avoid ending up in A&E! ).

Tbh I can't manage 3 things, five would be tough. Plus something like did I leave the house - I may be forced to for medical scan but with dire consequences. My relapses are so long I couldn't quantity them for noise.

Now rambling but guess I'm saying I'd rather answer a longer preset thing that someone with a better brain than mine co-produced with patients with better brains than mine.

When I did do funcap it made sense, picking a few from there might work but it would depend what the study needed I guess.

Edited to add paragraph spaces.

 

[Adrian]

Me too. But I’ve not got any experience with deeper analysis. Although know its used in quite a few areas.

Definitely interesting and could be good when there is lots of data from different sources to analyse too. It would be a lot more work to administer than what I was thinking, which was going for absolute minimum data and effort by everyone involved. Two different but potentially very valid approaches though.

I'm thinking with AI lots of tasks which could have proved difficult before could be doable now and automatable (although some work to automate). But if we are thinking to future trials we should have in mind these new capabilities in a design and it could lead to new ways of working.

 

[Hutan]

Some questions I have, and am unsure of the answers, would appreciate feedback

- Would picking 5 descriptors from Funcap 55 be easier/better than completely patient created descriptors or are these too restrictive?
- Should he question be can you do these things without significant negative impact? Or comfortably at the time? Or just did you do these things? How important is it to capture negative knock ons? Or would these simply reduce how often you did things so be captured by frequency measure?
- I like the idea of the patient measuring these 5 things weekly, it’s easy enough to then do a monthly total, what do people think? Would monthly work better or less well?
- Would we need the daily or weekly good/bad/average measure too? Does this give us extra useful data or is it too much to record?

Five seems like quite a lot - would three be good enough?

I think it should just be 'did you do them?' That cuts out the interpretation. I think any study still needs to be long enough to pick up deterioration due to overexertion. So, that covers part of the negative knock ons. I think the measure needs to be completed daily - that way there is an aspect of frequency, so that also covers part of the negative knock ons.

I like the idea of picking activities from Funcap.

 

[Jonathan Edwards]

Three is probably enough.

 

[Trish]

I assume this idea of each individual picking 3 activiies as an outcome measure would be for testing a treatment in a trial over a relatively short term, say up to a year. I guess it would be OK for that.

I think for longitiudinal studies of fluctuations of the illness over time and in relation to acitivity levels it would be better to use the whole 27 item version of FUNCAP.

 

[hotblack]

Lots of really useful and insightful feedback. Thank you everyone.

So maybe something like…

- Pick 3 activity descriptors that you feel best describe your current limitations and level of activity, you can choose from FUNCAP55 or write your own.

Try to pick a range which represents you best, with one you can usually do without much difficulty one less often and one you’re rarely able to do

- Each day (or week) record how many times you do each activity (without significant difficulty?)

- Each day (or week) record if you consider it a good, average or bad day/week for you

In this way you will get both weekly and monthly totals of ‘activities’ and ‘good/average/bad’ periods

You can use a spreadsheet, a piece of paper, or whatever method works for you (I/we could provide some ideas and templates to use, copy or print)

 

[hotblack]

I assume this idea of each individual picking 3 activiies as an outcome measure would be for testing a treatment in a trial over a relatively short term, say up to a year. I guess it would be OK for that.

Yes, very much that. Is there a statistically significant benefit to patients of the intervention.

All the other complexities in these questionnaires seem to try to get fine grained or subtle detail or discern if changes are present in different areas or in different groups of people occur or compare us with other conditions.

There may of course be objective or clinical measures which can be done independently, but the idea is a lightweight patient led way of answering ‘does this help me?’

 

[Utsikt]

Lots of really useful and insightful feedback. Thank you everyone.

So maybe something like…

- Pick 3 activity descriptors that you feel best describe your current limitations and level of activity, you can choose from FUNCAP55 or write your own.

Try to pick a range which represents you best, with one you can usually do without much difficulty one less often and one you’re rarely able to do

- Each day (or week) record how many times you do each activity (without significant difficulty?)

- Each day (or week) record if you consider it a good, average or bad day/week for you

In this way you will get both weekly and monthly totals of ‘activities’ and ‘good/average/bad’ periods

You can use a spreadsheet, a piece of paper, or whatever method works for you (I/we could provide some ideas and templates to use, copy or print)

How would you get around the issue of redistributing activities in order to do the things you measure more often? Or the opposite: not being able to do the things you measure because life happened and you had to use your energy on something else?

Maybe combining it with some kind of overall measurement of activity to see if you do more or less overall?

 

[hotblack]

Maybe combining it with some kind of overall measurement of activity to see if you do more or less overall?

I think that gets too complicated and difficult to measure. That’s one problem with these questionnaires, complexity as a result of trying to design for every possible ‘what if’. How would you measure activity? Most methods seem equally subjective and open to issues. Open to suggestions though!

How would you get around the issue of redistributing activities in order to do the things you measure more often? Or the opposite: not being able to do the things you measure because life happened and you had to use your energy on something else?

I’m not sure. Maybe we can’t account for every eventuality? Or maybe those things mentioned all balance out over time or enough payients? If a treatment/intervention has a meaningful, significant difference would it be picked up across a decent sized cohort and outweigh these effects?

Maybe we need to try it and find out.