RA survey is complete, working on results | Arthritis Information

While this forum is a fabulous place for sharing and getting information and support, I know we have frequently posted some of the same questions (are your symptoms symmetrical, are you seropositive or negative, where did your symptoms start) without really being able to quantify the answers.

I have just created a 65-question survey about RA (and related diseases) to help quantify these answers and would love it if you would all participate. This survey is not scientific, but it will help us to understand everyone's experience a little better. It is personal research on my part, to be shared here or on similar sites, not for commercial purposes.

The survey is set up on a generic survey website and if you send me your e-mail (PM me or e-mail me), I can send you a link to participate. The website will send you a unique ID so that I will not see who responds or what their individual answers are....in other words, this is confidential. If you'd rather not send me your regular e-mail address, you can always set up a quick one for free on sites like yahoo.com, gmail.com, etc.

I have tried to ask many of the questions we talk about here, but none of them are required, so if you're not comfortable answering or don't know the answer, that's fine.

As soon as I get some responses, I will be happy to post them here, or even to e-mail the results to individual participants.

So let me know if you have any questions, and if you're interested in participating, either PM me your e-mail address or send it to inner.glow.s_at_gmail.com (replace the "_at_" with "@"...I put it this way to help protect my address from being read by automated programs). Also let me know if you want me to e-mail you the results once I have enough responses.

Thanks!!!

(Edited because I can't count!)

InnerGlow2008-03-12 11:15:06Forgot to mention one other thing...almost all the questions are multiple choice, but if you don't have time to do all the questions in one sitting, you can stop and finish at a later time with your earlier answers saved.While I'm bumping myself to the top, I also wanted to say that if you'd like to suggest additional questions that are not on the survey, maybe we could do a follow-up survey if this one is successful.

, but I finally read where I can just post a link. So no need to send me your e-mail address, just go to this link:

http://www.eSurveysPro.com/Survey.aspx?id=5aab2bb6-9842-44e1-a955-9efad9d20223

I'm not positive whether it will still save incomplete surveys this way, but I guess it must somehow. Anyway, sorry for the confusion and I'm glad people can take the link directly!!

Good idea.... At Stephen's excellent suggestion, I've added the question of gender as the first question on the survey. Anyone who already took it can go back to answer that one if they want.Inny, I did it last night, in less than ten minutes...I think you've done a great job. I was curious to know how many were or are smokers.

George

[QUOTE=George1965]I was curious to know how many were or are smokers.[/QUOTE]Count me as one of them...

Have you taken the SURVEY yet.
http://www.esurveyspro.com/Survey.aspx?id=5aab2bb6-9842-44e1-a955-9efad9d20223
Bodak2008-03-07 15:20:16Yes I have taken the survey and I am also a smoker.

George

Oh, if we are adding smoking in as a question, count me in too....wonderful job on the survey by the way!!!I took it, it was swell. Hahah

I do not smoke!

I don't smoke...never have, never will. I'm allergic.

So far we've got 32 responses!To the top!Good job on survey. I just took it and found it very through.

WTG!

Excellent survey.

Non-smoker here. Never have.

nice job on the survey - it will be interesting to see the results. Was a smoker, but other than a few now and then (stress) haven't smoked for about 15 years.yes, took the survey, non smoker. Janie. Ok - took the survey.

Some questions.

Did you modify it to ask for smokers because the link took me to one that didn't ask that quesstion. Yes, I smoke.

On the question - how often do you flare? - needs a 'don't'. I chose the closest option which I think was 'occasionally'. I had a shoulder herx the other day so ...what should I have done? But it's not a flare...it's from the Zith.

Meds for chronic pain - is tramadol narcotic? I don't know (silly me) so I chose that choice hoping I was not wrong.

Symptoms under control - I've been pain free since 3 - 4 months into AP - but - the choices went from 'remission' to 'some flares'. I think you need another box - but not sure what you'd call it.

Finally, during the first time I tried to take it - a box popped up and then the screen went blank. I thought I'd hit some sort of 'tab' but it wouldn't go back. So, I got out and started again, but the first one was gone. I don't know if you'll end up with 2 from me.

Or any from me - as when I went to finish the screen went blank again.

Hugs,

Pip

Good job, guys....I've gotten 60 responses so far. I'll see what more we can get and then post the results.

Pip, I didn't add the smoker question to this survey. I only added the gender question, and most who already took the survey didn't go back to add their answer. By the time the smoking question was mentioned, there were 35 responses and I thought we wouldn't have much to work with. Thanks for the feedback on the questions. It is sometimes hard to think of all the possible answers....in designing one of the answer sets, I actually forgot to include the answer that I myself would have given to the question! Unfortunately, I can't tamper with the answer choices now without wiping out the responses. Also, since the answers are all confidential, I can't tell if I got 1 set, 2 sets or no sets from you (unless you filled in the blank with a particular answer that I can check for....for example, CRP=53 or successful treatment=AP).

Thanks, Pip and all, for your participation and feedback!

60 responses, thats should offer some good data...

For those that still wish to take the survey then click > SURVEY
Wooo - I went to check the first page and it told me 'you already did this survey' Eerie!

So if you get 2 with an RF of 706 saying "minocin and probiotics' throw out the one partially finished.

Pip the tech moron.

Aww, Pip, you did fine! I have one response on successful treatment saying "Minocycline and probiotics" and another that just says "Minocin". I'm not seeing an RF of 706 (I did see one of 710), so I'm not sure about that. Then again, my head's kinda foggy so maybe I missed it.710 would be me if only one with that number Yep, only one with that number. Pip, maybe the partial one got through? Unfortunately, I don't know how it tracks the responses, so I don't know how to tell you to do it again. Sorry.Ok, when you're feeling better, look again, because I'm pretty sure I typed the RF right. If you don't have it...let me know and I'll redo it from hubby's computer. Pretty sneaky of me, isn't it...I can out think the computer. LOL

Pip

Pippy..............

I'm buying you a kid's Barbie computer for christmas. You know, the ones that have like..4 buttons and a keyboard. And thats it. And it only takes you to barbie.com, and whatever other sites you set up when you get it.

Hahahahahahahahahahahahahahahahahaha

You know I love ya.

LOL Katie - love you too -

And it can only help! He's waving another wand over this one this weekend. It needs an exorcism.

Pip

Pip, I checked again and no 706. Try again from hubby's computer...that's a good idea.

And for everyone who participated...you rock!! We are up to 71 responses so far!!

Think we can get to 85?

i found the survey interesting thanks for posting it have a nice eveningGood survey. For the questions about how high the tests were when diagnosed my response says something like "don't know, I was 3." Never really bothered to find out what the results were from back then since it was 21 yrs ago and well, I was 3 so they didn't exactly tell me but my parents instead. Bump!!!! Now we're at 84 responses...a great sample! I'm on my way out (lunch with a friend), but will try to start posting the results tonight or tomorrow. I have to do some work to figure out the best way to get it on here.

In the meantime, more responses are always welcome! When I start to move the results over, the survey will be closed and won't allow more responses.

Wait for me! Hubby is hogging his computer! And I have to run errands today!

Pip

I agreed to wait for a couple of people, so I won't post the results until tonight. We're up to 89 responses now! Guys, so sorry for the delay. I'm having a bit of trouble finding the best way to post these because any write-in answers (either lab results or "other" answers) are summarized on separate pages, so it's taking a bit more coordination on my part than expected. I'm going to have to postpone now til tomorrow morning, but I promise I will get the results to you!

In the meantime, for anyone who still hasn't taken the survey but wants to, it will remain open.

I started the process to publish the results with a whopping 94 responses, but I forgot to close the survey and now there are 97 responses!

Unless I hear from anyone in the next 30 minutes, I'm going to close the survey, then work on publishing the results (which will take some time).

Thanks!

Hold for 3 more! That would be awesome! And much easier to calculate!

Pip

The survey is officially closed. We have 100 responses!!

Getting it ready to publish is going to take a lot more manual effort than I originally planned. Every write-in answer (whether it be an "other" choice or just a write-in question) takes manual involvement, and I'm trying to break the results into chunks I can publish on a free web hosting site.

I promise they're coming....

Whoo hooo! Just hopefully I didn't accidentally send you 3.

Pip