Help to bridge the communication gap between patients and doctors by completing the INTEGRATE online survey

[Paul_Howard]

Hi everyone,

The European INTEGRATE project aims to develop a strategy for monitoring and treating chronic diseases by integrating patient’s perspectives (such as quality of life) into traditional medical evaluations. The survey is now online and needs people living with SLE and doctors to take part.

The survey will take approximately 20 minutes to complete and will close on 15th February 2019. You can go straight to the survey here - integrate-sle.eu/survey-aut...

To learn more, please take a look here - lupusuk.org.uk/integrate/

We'd be very grateful to everyone who can take part. Thank you.

[eekt]

It has this great question:

"Do you feel the need to learn how to explain to people what it means to have SLE?"

YES, YES, YES!

Thanks for the invitation Paul - here's to bridging the gap! xxx

[LH44 in reply to eekt]

Until you realise it goes in one ear & out the other then stop wasting my time!! ☺

[eekt in reply to LH44]

😂 😂 😂 xxx

[Barnclown]

Thanks Paul: will do this survey TODAY 👍👍👍👍🍀❤️

[LupusKaren]

Thanks Paul, have completed the survey

[Cal66]

Thank you Paul competed 2 surveys

[Krazykat26]

Hi Paul..my diagnosis is SCLE..does that exclude me from the survey do u think?

[Paul_Howard Partner LUPUS UK in reply to Krazykat26]

Hi Krazykat26 ,

I don't actually know. It depends whether there is a question that asks for your diagnosis. I haven't been provided with a list of the questions and I don't want to mess up their results by going through them. One the website it mentions SLE but not other types of lupus. Perhaps someone who has completed it already can answer? LupusKaren , eekt ?

[eekt in reply to Krazykat26]

UCTD, MCTD is in there ...can't recall if SCLE is specifically is included, but it's definitely a broader range than just SLE! Worth giving it a go! xxx

[Krazykat26 in reply to eekt]

Thanx eekt..will do xx

[tashi]

Survey done. Paul do you know how this is being circulated to doctors? I'm seeing my Rheumy next week I could print this info in case he might be interested - if that's ok?

[Paul_Howard Partner LUPUS UK in reply to tashi]

Hi tashi ,

I imagine it is being circulated through their professional networks and organisations but I don't actually know as it isn't our project. I don't see the harm in providing your consultant with information about it.

[suemh2]

Many thanks for posting the link to the survey, have just completed it. Hopefully there'll be feedback from Integrate in the future.

[Foggyme]

Completed. Requested a copy of the results so will await with interest.