Old 03-10-2015, 01:07 PM #1 (permalink)
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Default Fibromyalgia Patient Survey

Dear Prospective Participant,

My name is Tami Soleim. I am a Graduate student from Edgewood College in Madison Wisconsin. The purpose of this study is to examine how the perception of medical care, within the Fibromyalgia patient population, affects their ability to be treated well and feel better.

To participate, you must be 18 years or older. Your participation in this study is completely voluntary and no compensation will be rewarded. If you decide to participate, you have the right to withdraw at any time. The survey will take approximately 15 to 20 minutes to complete. Please answer the questions to your comfort level.

The information gathered in the surveys is anonymous, no identifying information will be collected and the data will be stored on the website’s password secure servers. The principle investigator, Tami Soleim and research advisor Ferrinne Spector will be the only two with access to the data collected, which consists of only your answers to the questions being asked. Results from the study will be used in the research methods class and a conference presentation but only in summary of the results; no identifiable information will be used.

This study will allow for learning more about medical perceptions and how these perceptions can affect the provider/patient relationship. Your participation in this study has the potential to improve medical practices and patient experiences while using medical resources.

Thank you for your consideration.

Sincerely,

Tami Soleim
tsoleim@edgewood.edu

Ferrinne Spector
fspector@edgewood.edu

Please follow the below link to the survey:

https://edgewood.co1.qualtrics.com/S...CQDJefdci0PGsJ
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Old 03-12-2015, 05:32 PM #2 (permalink)
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Default Re: Fibromyalgia Patient Survey

Thanks for sharing this. Please let us know your results and provide us with a way to access your paper,
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Old 03-12-2015, 10:30 PM #3 (permalink)
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Default Re: Fibromyalgia Patient Survey

I'm with Loftpat. I would like to know the results or see the report when it's complete. I'm not sure the questionnaire will capture all of the nuances of fibro. I found it hard to answer several of the questions because pain and fibro are so intermingled. I'll just be interested in seeing the final product if possible....
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Old 03-14-2015, 09:17 AM #4 (permalink)
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Default Re: Fibromyalgia Patient Survey

Fibro is a chronic pain disease.... i havent looked at the questionnaire as im doubtful you will get any results and that your personal info will not be shared.
like it said only those too folks will know who and what is said wink wink. as an IT guy for over 25 years, you cant hide your id on the internet. now that you both downloaded the Questionnaire and more than likely a tracker or even a virus. i would advise you to run a scan. only download stuff from people you know and trust. for all you know they are not even from this country. please think safety first.

they could have asked those questions here and gotten a lot of replies. and it would have been safe on this site. wonder why they didnt do that?....hmmmmmm
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Old 03-14-2015, 11:36 AM #5 (permalink)
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Default Re: Fibromyalgia Patient Survey

I did the questionnaire. It didn't download anything and didn't ask for personal information. You're right though, it could be bugged. I decided to respond to it to hopefully, raise awareness of this illness. I don't know how useful the info will be either because I don't know if it got to the heart of our illness. It did ask a lot of questions about our perception of health care providers and whether we believed they are understanding of fibro. I did, however, look up the university. It's in Wisconsin. The questionnaire was a canned survey package that you just check the answer and had a couple places where you added text. The survey package will roll up the responses and do an analysis to it for them. The agency I worked for used to do survey's all the time to get feedback on various things related to parks.

Very good suggestions cmetryme though...One can never be too careful....
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Old 03-14-2015, 06:54 PM #6 (permalink)
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Default Re: Fibromyalgia Patient Survey

I followed the link which would be hard to just place in your web search as the whole link is not visible to copy. I think it is a honest survey as the contact info is at the bottom and it is a edu website requesting the information. Yes, one must be careful but I have done many edu surveys that are given by companies who partner with schools. As for your ip address everywhere you go on the net collects this information.
This is the survey information page:


Research Procedures:
You must be 18 years of age or older to be a participant in this study. You should have a diagnosis of fibromyalgia. This study will consist of a series of questions about your perception of medical attitudes and how this influences your ability to be treated well and feel better. This research will be conducted in an online survey, which consists of four parts. The four parts include: general information about the participant; the frequency in which you seek care; how likely are you to seek help; your perception of medical attitudes; and how those attitudes influence you. This survey will take roughly 15 to 20 minutes to complete.

Risks being in the study:
This study has minimal risks. This study has the potential to bring up emotions that may make you feel uncomfortable or distressed by answering questions about sensitive material. Should you have any questions or concerns you may contact the researcher Tami Soleim at tsoleim@edgewood.edu or research adviser Ferrinne Spector at fspector@edgewood.edu

Benefits of being studied:
This study does not provide any compensation or reward for participating in this study. This study will allow for learning more about medical perceptions and how these perceptions can affect the provider/patient relationship. Your participation in this study has the potential to improve medical practices and patient experiences while using medical resources.

Confidentiality:
The information collected in this study is anonymous, which means that not even the researcher will have access to who has participated in this online survey. All information collected from this study will be kept on a secured password protected online network called Qualtrics. The researcher (Tami Soleim) and the research adviser (Ferrinne Spector) are the only two people to have access to the data collected, which only consists of only your answers to the questions asked in this survey.

Voluntary Nature of Participation:
Your participation in this study is completely voluntary. If you decide to participate, you have the right to withdraw at any time. If there is a question that you do not want to answer, you may skip over that question. You have a right to skip over or withdraw from this study should you feel the questions are too personal or if answering the questions make you uncomfortable.

Contact Information:
This study is a requirement of my master’s program at Edgewood College. If you have any questions or concerns you can contact the researcher Tami Soleim at tsoleim@edgewood.edu or at 608-369-1389, you may also contact the research adviser Ferrinne Spector at fspector@edgewood.edu or at 608-663-4374.

Statement of Implied Consent:
I have read the above information. I have asked any questions I have and have received adequate answers. By continuing on to this survey, I am consenting to participate in the study.
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Old 03-14-2015, 07:22 PM #7 (permalink)
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Default Re: Fibromyalgia Patient Survey

I just completed this survey and it was all about fibro and treatment by others and doctors. I think it was a good use of my time and as I said before I believe it is legit. So don't be put off by negative comments and I encourage you to check out and complete the survey.
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Old 03-14-2015, 08:45 PM #8 (permalink)
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Default Re: Fibromyalgia Patient Survey

I completed the survey and hope it helps you. It is hard to get a good insight as to what people go through with fibro. When family members and co-workers blow it off it is hard. I put my game face on at work but then cry when I get home because I hurt so bad. Some days it truly is disabling.
Thank you for asking us to take part.
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Old 03-15-2015, 07:45 PM #9 (permalink)
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Default Re: Fibromyalgia Patient Survey

I have done many surveys through this company and never had any problems. I have very good protection on my computer, that would stop me if the site was not locked or if the link produced an error, not found message, or redirected to a non-educational website. The person is doing a research paper and does not ask for any personal information. The entire link was coded for the protection of the survey takers, as well as, the company doing the survey. Many links such as this do not show the whole link do to space constriction, or as the link could be tampered with by someone else. I was not referring to your warning as being negative, but I myself took the brief survey and was happy I did so. You are entitled to your opinion and if your not happy with the survey, then just don't do it. You offered your opinion and other members can decide for themselves if they want to do it or not. I checked out the collage and many grads are doing research papers on different topics and using this survey company to ask questions.
This collage is located in Madison, WI.
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Old 03-16-2015, 12:19 PM #10 (permalink)
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I did call and email the collage and I am placing my email and the response i got from the collage and not from the emails provided. I am allowing this survey to be conducted on this forum as it is not against the website rules and I have permission to allow this type of survey on this forum.

To: Jenna Alsteen
Subject: question

Jenna,
Are there grad students at your collage named Tami Soleim and Forrinne Spector
doing a research study on the medical profession and effects on Fibromyalgia?
I manage a Fibromyalgia forum where these two are conducting a survey and want to confirm they are
who they say they are for our members.

Please respond.



I can confirm that Tami Soleim is conducting a study on the medical profession and effects on individuals with Fibromyalgia. I am her research supervisor. Please let me know if you have any additional questions.

Best,


Ferrinne Spector
Assistant Professor
Psychology Department, DeRicci 110J
Edgewood College
Madison, WI
608-663-4374
fspector@edgewood.edu

“Begin at the beginning,” the king said gravely, “and go on till you come to the end: then stop.”

- Lewis Carroll, Alice in Wonderland

From: Jenna Alsteen <JAlsteen@edgewood.edu<mailto:JAlsteen@e dgewood.edu>>
Date: Monday, March 16, 2015 at 6:54 AM


From: Jenna Alsteen <JAlsteen@edgewood.edu<mailto:JAlsteen@e dgewood.edu>>
Date: Monday, March 16, 2015 at 6:54 AM
To: Ferrinne <fspector@edgewood.edu<mailto:fspector@e dgewood.edu>>
Subject: FW: question

Hi Ferrinne,
Would you like to respond to the individual below?
Thanks,
Jenna
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Old 03-18-2015, 01:09 PM #11 (permalink)
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Default Re: Fibromyalgia Patient Survey

As i have read here many of you would like some kind of results from surveys on FMS. so i went online to find just that.

The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) a gov website teams with Advocates for Fibromyalgia Funding, Treatment, Education & Research. They have done many studies on fibromyalgia ,surveys, and support Fribro awareness. they do have some survey results on their website for review. I thought it was worth my time to read some of them. the NIAMS site had lots of information and other links that maybe worth reading. i learned some things on these sites. i hope you can get to them.

I believe in learning as much as i can about FMS. i'm just trying to spread some knowledge.

thanks for reading.
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Old 03-23-2015, 11:06 AM #12 (permalink)
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Hello everyone, I am the person conducting this survey. I appreciate all the feedback I have gotten on this forum. I am just confirming this is a legit research study and no identifying information will be obtained. I currently attend Edgewood College Graduate Program and am looking at perceived stigma and how this affects patient entitlement to feel better and be treated well. I agree with many of you more research is needed in this area but it can be hard studing all aspects in one research study. If you have any questions please feel free to email me at tsoleim@edgewood.edu I would be happy to answer any questions you have or any concerns you have. Again thank you for allowing me to conduct this study and participating in gaining further knowledge on the topic I have chosen.

Tami
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Old 03-23-2015, 11:10 AM #13 (permalink)
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Hello I am Tami, the person conducting this study. I wanted to thank you for being a participant in this study. I also wanted to let everyone know this study is confidential and no identifying information will be gathered. This is a secure website and used often by researchers. As the above information states I am a graduate student at Edgewood College in Madison WI. If you have any questions or concerns please email me at tsoleim@edgewood.edu
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Old 03-23-2015, 11:15 AM #14 (permalink)
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Default Re: Fibromyalgia Patient Survey

Hello,

Thank you for your response. I am the researcher conducting this survey. I understand there are many aspects to the diagnosis of fibromyalgia and unfortunately when conducting studies we are limited by the scope which we choose to study. I agree more study is needed in this area and it is my hope with this study to allow for just that. I will have to check on how to provide you with these results once study is completed. Again thank you for participating in this study

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Old 03-23-2015, 11:20 AM #15 (permalink)
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Default Re: Fibromyalgia Patient Survey

Hello,

I am the researcher conducting this study. I understand you are questioning the validity of this study. I hope to assure you that this study is valid, has been reviewed by the research board, is confidential and no identifying information is obtained. I am looking into how to share study results with those who have requested as I believe they have a right to know what this research showed. If you have any questions or concerns please email me at tsoleim@edgewood.edu and I would be happy to clarify and answer any concerns you may have.
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