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Quite impressive levels of administrative sloppiness. Hardly the most important part of this but it does seem indicative Source

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...

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...

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...

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...

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

The discussion section of the paper is really interesting and very relevant. I’d quote it but copying from the png/pdf is giving terrible formatting issues which are a faff for me to clean up atm.

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...

Oh I’ve missed that thanks. And I do like what they’re trying to capture, their descriptors are good. But I like the idea of making it even more lightweight. The studies I’ve found best have been a very short weekly questionnaires, I can keep track of a few data points over a week and generally...

Whoops! Sorry. Hadn’t got far into that thread yet. Sorry for the duplication, hopefully it’s a sign of a useful idea for it to have evolved in two different habitats independently!

The problem is FUNCAP is still long, it’s 55 questions and has a 6 point scale. There are a bunch of things which are not applicable so will just get the same answer, it’s trying to cover too much and is too complex. In his proposal, the question is simply how do we measure if a patient...

:rofl: Won’t somebody please think of the… experts

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...

Just to add, one reason often given for these measurements is to measure outcomes of treatments. And we hopefully will need measures of those. But this level of detail would only seem useful for interventions which have minimal impact (so ones which basically don’t work). And seem completely...

I hear you and empathise @CorAnd Hoping for autumn to come sooner rather than later. Then again I have problems when I get too cold too. It’s just either less bad or more likely a lot easier to avoid/control than heat. Understanding why his happens to so many of us, and our bodies react so...

This reminds me of the Red Dwarf episode/book Better Than Life

I was writing this with something else in mind but it seems apt here.. The best I’ve been is when doing less than the limits this disease imposes on me allow. Not pushing or being pushed. I don’t need advice on how to do this. I don’t need an app to track things. I am the expert here and I...

Creating environments that allow people to be wrong or make mistakes is really hard. And something I was really interested in during my career. Because it’s essential for creativity, making new things and getting the best out of people.

I like that way of putting it @Utsikt and being open to being wrong, changing your mind is really important. But it is hard. And the more we wrap ideas or beliefs up into our identity the more personal they become and harder to let go of. I think that is sometimes what the core of BPS true...

I mean similar messages from the government. Saying they will not increase specific funding for Parkinson’s, referring back to the NICE guidelines, saying it is up to ICBs, talking about how research is funded through the NIHR and funding applications are welcome.