PMR, rheumatology and other autoimmune diseases patient survey

[Fran_Benson]

Hi everyone, we've been asked by Dr Melanie Sloan at Cambridge University if we can share details of a survey they are running. We shared their previous one here on HealthUnlocked and many of you helped by participating. If you would like to do so again, please keep reading 😀

DETAILS OF SURVEY

Information provided by Dr Mel Sloan:

PMR, rheumatology and other autoimmune diseases patient survey (click here - bit.ly/MM_PATIENTS2024) from the University of Cambridge.

This survey asks about your medical relationships, disease symptoms, and health. It should take around 30 minutes to complete (you can pause or stop at any time). We are supporting this study as Vasculitis UK funded an important part of the work, it will raise awareness about important issues and where more support may be needed, but it is entirely up to you whether to take part.

Everyone who enters can choose to be entered into a prize draw with two prizes of £200 being drawn once the survey closes (likely Jan/Feb 2025)

Please use this link - bit.ly/MM_PATIENTS2024 - to access the survey and information sheet. If you have any questions, please contact Melanie on [e-mail]

This study team is led by Dr Melanie Sloan, who is a rheumatology patient as well as a senior academic. Her team includes senior rheumatologists, Prof David D'Cruz and Dr Arvind Kaul, and is well-known as leading the way in fully involving patients as research partners and changing care by the work they publish. This is only made possible by all YOUR involvement in these studies.

Please see below for one of the recent relevant articles they have published with your views and experiences:

Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. doi.org/10.1093/rheumatolog...

[Hidden]

Hi, sorry but I couldn't get any further than 'what effect does your HRT have on your symptoms' , at 50%. Although I answered that I had HRT in the past pre diagnosis, there was no 'not applicable' option .

[Nextoneplease in reply to Hidden]

Might ‘none’ have been an option?? 🤔

[Hidden in reply to Nextoneplease]

"Don't know' is the only other option for 3 questions in the section........but I do know🤣

[Nextoneplease in reply to Hidden]

Oh ! Maybe I should try it and see how I get on!

[agingfeminist]

there were several questions that had to be skipped because they were not relevant and there was no opt out option. But you can usually just click next...or click other...and say not relevant. This is not a well designed survey.

[random901]

agree with agingfeminist re survey's design, but I completed it anyway as any research deserves support.

[Noideas]

Also agree re survey design but completed as best I could. Surprised there wasn't a question about any previous autoimmune diseases

[Excelsior80 in reply to Noideas]

me too Though only for a couple of questions I had to take best non ideal option, most were ok

[AyJayBass]

Done

[Nextoneplease]

Done 😊

As others have said, no relevant answer choice for some questions.. and only seemed to be interested in ‘main’ autoimmune disease.. ?

But did it anyway to show support

[Nextoneplease]

just to add: this survey does take a fairly holistic view and also asks very specifically about the clinician/patient relationship. So worth doing if you have the time I think 😊

[Hidcote]

I gave up despite my desire to help research because it talk about clinicians in general and some have been good and others less so.

[PMRpro Ambassador in reply to Hidcote]

Yes, I felt that was badly done. I distrust some of the doctors in our hospital after awful ED experiences - but my own doctors are all at least good - the rheumy and EP cardiologist are superb.