Rheumatology patient survey from the University of Cambridge and patient groups

[Aribah-NRAS]

Rheumatology patient survey from the University of Cambridge and patient groups. Their survey asks about your medical relationships, disease symptoms, mental health and views of rheumatology patients. They want to explore what you, the patients, think are the effects of your disease, living with a difficult disease and your interactions with clinicians, on your life, wellbeing and health. It should take around 20-40 minutes to complete. This study will raise awareness about the areas most important to you and where more support may be needed, but it is entirely up to you whether to take part. Please click on this link to complete the survey: bit.ly/inspire_patients

For further details, please read the following information sheet: cambridge.eu.qualtrics.com/... you have any questions, please contact the lead researcher (Melanie) on: [e-mail]

[AgedCrone]

Don’t know about anybody else..but when I ticked to read about more information……I got blurb about starting a website!

[Boxerlady in reply to AgedCrone]

It worked ok for me, AC 🤔

[AgedCrone in reply to Boxerlady]

I only tried once in the middle of the night when I couldn’t sleep…maybe I’ll try again later.

[sunnyweek in reply to AgedCrone]

Yes I got that too.

[AgedCrone in reply to sunnyweek]

So did I …..twice…in fact I’ve given up.I wonder if anyone succeeded..if so…was it worth it?

[sunnyweek in reply to AgedCrone]

In the end I ended up just doing the survey.

[Aribah-NRAS Partner NRAS in reply to sunnyweek]

Hi sunnyweek, apologies about the incorrect link, this has now been amended. To read for information please visit cambridge.eu.qualtrics.com/.... Hope this helps! Aribah😊

[Aribah-NRAS Partner NRAS in reply to AgedCrone]

Hi AgedCrone, apologies about the incorrect link, this has now been amended. To read for information please visit cambridge.eu.qualtrics.com/.... Hope this helps! Aribah😊

[AgedCrone in reply to Aribah-NRAS]

Thank you

[Moomin8]

I've completed the survey.

[sunnyweek]

Done.

[Shonkie]

can't open it

[Angjoplin]

Done. Opened fine for me.

Very interested in the mental health asspect and complete lack of help in my experience.

[Amnesiac3637]

Not sure whether this survey is well set-up. From question 7 onwards it wouldn’t respond so I’ve given up.

[Mmrr]

Completed the survey.

[Amnesiac3637]

Update - a bad workman always blames his tools. I failed at the first hurdle but have now completed the survey……..🙄

[Boxerlady]

Done - I liked the fact that you could do it in stages and easily return to where you'd left off.

[virtualreality]

done!

[Luludean in reply to virtualreality]

I am totally hopeless at anything basically but, surprisingly I filled in the survey suite effortlessly. It is about mental attitude to pain . See « pain clinic « …. Minfulness. Etc

[MelanieSloan]

Thank you very much to everyone who has completed the survey so far. We are up to almost 1,200 completed in total, and 328 of those are from people with RA or other inflammatory arthritis. We are hoping for 400 so if you haven't had time yet, please do try and complete (you can stop and start as long as you use the same device).

We also need to have a healthy comparison group to see the differences in medical relationships and mental/neurological health so we are asking everyone who has completed survey to please send this link - bit.ly/inspire_friends​ - to a few 'healthy friends' (they can't have any long term or serious physical disease) and ask if they'll complete please.

Thank you and hope everyone has a lovely weekend!

[JenniferW in reply to MelanieSloan]

Hi Melanie

I completed the survey - one small issue - I think some of my issues might be related to my thyroid issues as well as lupus/RA and there wasn't a place to mention an underactive thyroid. In particular the restlessness and sleep problems.

Jennifer

[MelanieSloan in reply to JenniferW]

Thanks for raising this JenniferW, that's no problem. Most of us with autoimmune diseases often have multiple conditions and we take account of that in the analysis.

Thanks to all who have done the survey so far, we now have over 1,200 completed and 330 of these have RA/other inflammatory arthritis, so we are nearly at our target of 1,500 in total and 400 each of RA/IA and lupus. Many thanks to you all