Patient led measure of outcomes

[bobbler]

Thinking about how we can measure if treatments work. A lot of the questionnaires and scales seem to try to compare across subjects, which is really difficult for many of us, they don’t fit our experiences or severity. So people try to capture a range of experiences and we end up with huge long questionnaires. So how do we measure outcomes?

How about this
- Pick and describe in your own words 5 activities that you feel define your current limitations, include 2 things things you can only occasionally do
Examples: get to the toilet in the morning, sit up comfortably throughout the day, have a 5 minute conversation with someone , have a shower, walk to the car (I don’t know I haven’t done those last two for years but you get the idea, the usual sort of things we see on questionnaires, but defined by the patient)
- Count how many days you can do these per month, before and after interventions, without negative impact, record weekly
- Maybe add a measure of how many days are ‘good’ ‘average’ or ‘bad’ for you, record daily

This would be person specific but capture the changes which are relevant and/or important to them and how their ME/CFS affects them. It would be quicker than most things to record but I think would allow measurement of if an intervention has actually worked.

Probably needs some refinements but…thoughts?

I've just re-read this. And have picked up on the bit in bold in this:

Count how many days you can do these per month, before and after interventions, without negative impact, record weekly

And I think that is an issue. Because almost everything has a negative impact, I just have to make some wicked automatic mental calculation of pros vs cons that sort of combines in with everything else to become eg how much I can brush teeth, shower etc. almost certainly the same with time lying on back or not vs boredom.

Is the negative impact bit important?


I think I'd really struggle with assigning how many days were good, ave or bad or labelling most days that aren't terrible as something.

 

[NelliePledge]

yeah I agree there are 2 aspects 1- managing to do the activity at all, and 2-=the consequences of doing the activity.
But I think the frequency is a rough proxy for the consequences because if they were less I would go out more often.

I think without negative impact doesn’t quite work because when I go out there’s always negative impact just less or more.

 

[Kitty]

Is the negative impact bit important?

Yes it's crucial, but if we do a good enough job of coming up with revealing activity categories, and recording them objectively—i.e., things we actually did, not thought we could probably do—it should show up in long term patterns.

It won't show that we were feeling really crap when we did something, but that crapness will influence what we chose to do in the following days, the following week.

 

[hotblack]

I wonder if the people at visible would be willing to engage with this @hotblack might be worth asking

That’s an interesting idea

Is the negative impact bit important?

Good question and I understand the mental gymnastics and difficulty of capturing this. I’m not sure what the best way is, hence proposing some ideas and seeing if they stand up or can be improved.

I think I phrased it better with ‘significant negative impact’ but maybe ‘more negative impact than usual’ could work? And of course this is all subjective, so what these phrases mean is up to an individual.

My thinking was the difference between something like getting to the loo when you manage it and when it is like hell (see the examples I gave here). So in this way we could capture when an activity you regularly do or have to do becomes harder. Because that could be important and people often say capturing it is.

Maybe you’re right and it’s not important. And just are you doing the thing is what we want to capture. It will depend upon what activities people choose I guess?

Kitty puts this bit well

It won't show that we were feeling really crap when we did something, but that crapness will influence what we chose to do in the following days, the following week.