Be Heard via the RPF's Rheumatoid Arthritis Patient Survey | Rheumatoid Arthritis Warrior

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26 thoughts on “Be Heard via the RPF’s Rheumatoid Arthritis Patient Survey

  • July 15, 2011 at 10:57 am

    What entity is collecting this data? What will the information be used for? Does HIPA apply? Will my personal information be sold, re-used, or made public in any manner? Are the Researchers qualified to make relevant statistical analyses? Will insurance companies, big pharma, or Social Security have access to these data and their conclusions?

    I caution those people on permanent long term disability to exercise extreme caution when providing objective medical information over the Internet without knowing it’s purpose or the level of scrutiny.

    Even with answers to my questions I would still be careful.

    • July 15, 2011 at 1:22 pm

      Hi Gina, I’m sorry if I was unclear.
      As I tried to say on the blog post: the RPF is collecting the data and it will be used to as it says to learn more about us a community in order to serve our needs. There is no personal information in the survey and no way to identify who completes the form. No statistal conclusions would be made without transparency of the raw numbers. No companies or entiites could gain access to the data since Wufoo is a reputable company. Even if Wufoo’s site were hacked, respondants are not asked for a name or any other identifying characteristics so it would be impossible to connect them to the survey.

  • July 15, 2011 at 1:02 pm

    My experience has been a long, twisted road to travel….first diagnosed with Fibromyalgia in 1989 went years feeling like crap, pain, fatique. Blood work showed possible lupus or rheumatoid arthritis with yet another doctor who said fibromyagia again~now have a skilled rheumatologist who is a good fit, explains everything…came to her with poss. lupus and rheumatoid arth. After about 6 months I was given the rheumatoid arth. diagnosis in 2009~a long road obviously. Taking plaquinel, lyrica, sometimes cataflam or soma. I’ve had several rituxin treatments which have worked somewhat better than methatrexate pills or shots. I am tired of explaining the all arthritis is not rheumatoid. When someone asks what’s wrong and I tell them, they come right back with oh I have that, my whole family and on and on.
    My symptoms are joint pain in fingers, wrists, arms, knees…burning nerve pain in legs and feet especially toes. Sleep disruption….tired all the time.
    I wish we could teach the public more, find better drugs, tests for all the different symptoms a person can have.

  • July 15, 2011 at 1:03 pm

    Wow!!! Interesting survey!!

  • July 15, 2011 at 1:04 pm

    Very good survey

  • July 15, 2011 at 2:05 pm

    That was a GREAT TEST! It addressed all the stuff I think about and wanted to SAY, SOMEWHERE! Thanks so much for offering us the chance to make ourselves HEARD! xoxo

  • July 15, 2011 at 6:29 pm

    Thank you Kelly. You been a shining light for me this last year. Hope you get many responses. Now I’m going back to bed, lol.

  • July 15, 2011 at 9:13 pm

    Yikes! I hit “enter” while I was in the middle of the survey, which submitted the survey before I was finished. I missed the last section. What should I do?

  • July 15, 2011 at 10:27 pm

    I think the survey is very US-centric with ‘copays’, but if that’s the target audience of your RA foundation fair enough, although that should be made clear so those of us in the rest of the world don’t skew your results 🙂

  • July 16, 2011 at 4:20 am

    It will be interesting to see what sorts of conclusions can be drawn from this survey. Thanks Kelly.

  • July 16, 2011 at 8:21 am

    Thank you Kelly for this important survey! I am eagerly awaiting the collective results, and more importantly the introduction of the patient foundation website.

    If I could make a minor suggestion, I would love to know what % of RA patients typically have elevated CRP and ESR.

  • July 16, 2011 at 9:55 am

    Good survey Kelly! So you have created a foundation? What’s it going to do? Tell us more!

  • July 16, 2011 at 6:06 pm

    My only comment is the question about insurance and fincial hardship. I think you could put an intermediate level between the first two choices. I have good insurance, but am seeing increases which while not really breaking me, the increase due to drug shortages (Arava went from 17 to $100 per month until I can find generics)are being felt. I don’t know, just a thought.
    I filled it out, always glad to help.
    Hope you & family have a nice weekend. 94 here and getting hotter, hope you all stay cool.
    Phil from Syracuse

  • July 17, 2011 at 1:09 pm

    The survey was ok, but I was just diagnosed so on one of the questions there was no right answer. I cannot work right now and have not applied for disability yet since I was just diagnosed 2 weeks ago. The meds I just went on turned out to have sulfa in it and I am highly allergic so just went off of it to get the hives to subside, so another question that wasn’t exactly right either about the meds.

  • July 17, 2011 at 1:43 pm

    I liked the survey, what is going to be done with it?

    On a couple of questions, I would have liked to click 2 or more options but it would only take one. Like the ‘pay’ question: I just got approved for disability this last week, but since I lost my job in January and can’t afford Cobra anymore, I have no insurance. I could have marked 2 answers for that question; that I paid via insurance in the past, but now I pay co-pays & appointments myself.

    Thanks for getting the word out about Rheumatoid Arthritis.

  • July 18, 2011 at 7:03 am

    Have tried to open the survey but can’t get into it. Are other people having problems or is it just me?!

  • July 18, 2011 at 7:12 am

    Came back to see response to my questions about the survey and see my post was deleted. I was not rude or inappropriate and asked legitimate questions. will defiantly not participate in survey now. censorship is not cool.

    • July 18, 2011 at 10:25 pm

      Comments aren’t deleted. It may be in spam. I’ve been offline the last few days (w/exception of the rheum chat Sunday at 3edt).

  • July 18, 2011 at 7:15 am

    Hi Kelly, I have completed the survey, going through it made me realise how unsatisfied I am with my treatment plan. Thanks you my friend for all your hard work and all your support, love to you & your family xo

  • July 18, 2011 at 6:18 pm

    I appreciated the survey…so many people just do not understand the frustration of being misunderstood as a hypochondriac, attention seeking, drug addict when the pain is so real and unrelenting.
    I feel very isolated from people, even my family at times, because I know they don’t understand the pain I live in every minute of every day. Just because I smile doesn’t mean I feel fine, its just because even I get tired of hearing myself say, “I hurt so bad”.

  • July 19, 2011 at 5:33 pm

    Kelly – great to see this information being gathered – though I have not been able to work and was self employed so do not have any disability insurance. its been hard financially. there needs to be a line items for others like myself.

  • July 22, 2011 at 6:33 am

    I just filled in the survey and I literally could have written an essay on just about every question. Thank you. Just the nature of some of the questions makes me feel like someone out there might have to tackle what I do. It helps to know it’s not just me.

  • July 24, 2011 at 9:41 am

    Just a great big Thank You to Kelly and those who put this website together. I just found it a short while ago.
    This is
    the first place I have found that there are other folks out
    there suffering with the real issues of R.A., the pain , depression, and joint damage. Family can be and is supportive but unless you’ve say spent a night in (R.A. Flare-Up Hell),and then finally arisen in the morning, recalling the sleepless,painful night,you’ve had, it’s like a war story of sorts. Your family though consoling hasn’t a real clue how painful,and depressing things can be. How do you sprain a joint in bed? How did it get so swollen overnight? You answer is trying to get out of bed to use the restroom.

    One of the most frustrating and depressing part of RA is that I will make plans to do something, say dinner with a friend but by the next day I am too sick to go.Plans can even change from morning till afternoon because of an RA crash! After a few times friends stop asking you over and you stop asking them,it gets embarrassing. I no longer promise to help or supply a dish at a wedding or potluck for example as I don’t know if I can accomplish it.Friends don’t understand and eventually slip away or become distant as you can’t do the things together you used to. Loneliness becomes your new Best Friend. I am or at least were a Type A personality with 2 jobs,activities, and projects to do. So much to do,so little time. then came R.A.

    I have been living with RA for 16 years and this is the first place I’ve found that I can read from others what they
    are going through is what I also experience.I’m not crazy after all.It’s a clue that the battle is still being waged,fought,and there is still an undecided winner.We must keep fighting. Some day’s you chalk up to worthless some days are kind of good. Look for and Cherish those kinda of Good Days I’ve learned more here than anywhere.Thank you, Thank You again for this site. Keep Fighting It’s Worth It!

    • July 24, 2011 at 1:15 pm

      Sheree, you sure made my day special. Thank you.
      Here’s to keeping the fight going!

  • October 22, 2014 at 2:05 am

    Hi, I was going to fill out survey but got this message: This form is currently private and cannot be viewed by the public.

    • October 22, 2014 at 8:53 am

      Brenda, I’m sorry – that survey ended & we’ll put up a new one soon. I need to add a note here.

Comments are closed.

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