[eric]

FYISurvey on Patient Education in IBSevelopment and Validation of the Patient Educational Questionnaire(IBS_PEQ) Phase 2We are conducting a study to find out what patients with Irritable Bowel Syndrome (IBS) already know about their condition and what they would like to learn, so that healthcare professionals can provide effective education on IBS.All information will be collected in ways that protect personal privacy. Personal identification is needed only for mailing financial compensation.$10.00 will be paid to participants 18 to 65 years of age whose IBS symptoms match the criteria required for this research project (based on a screening questionnaire) and who complete the study questionnaire. Participation will only require about 45 minutes of your time! http://www.med.unc.edu/medicine/fgidc/ibs_peq_phase2.htm

 

[roger]

I just completed this. I filled out the preliminary a few days ago and they emailed me a password and URL to complete it. It only took about 20 minutes and I think it's time well spent. With all of the posts here regarding docs that don't understand IBS and tell us to just live with it, there seems to be a need for them to be better educated about who we are and what we want. Maybe some of them will see the results of this survey and use the information to improve the care of their IBS patients.

 

[eric]

Roger, I am glad you filled this out.

 

[eric]

anybody else take this to help IBS research?

 

[LuckiStar2]

I took the complete survey yesterday. I suppose it should be confidential and I shouldn't discuss it but some of the things they asked where really strange. Carly

 

[Tiss]

I don't mind taking the survey but want to make sure that this is totally safe! I mean, they ask for personal information. Eric, do you know the people running the study and can you vouch for them and this study? Thanks, Tiss

 

[Kathleen M.]

It is the functional GI clinic at UNC, they are a top notch research facility. They get grant money to do these sorts of things and the fed regulations are pretty tight on what you can do with information gathered on research subjects.K.

 

[Tiss]

Ok, thanks K.

 

[Tiss]

It is hard to answer some of the screening questions because many of my symptoms have been helped by Zelnorm and magnesium. I would have answered differently a few years ago.

 

[K9Mom]

I wish they would also do some physician education on IBS...what to rule OUT (like thyroid disease, celiac, etc.) before sticking us with the IBS label.

 

[NancyCat]

I took this survey too from UNC. They pay $10 for taking it but I would do it for free if it would help someone with IBS.

 

[Faustus]

Why limit it to those up to 65 yrs. I have had IBS-D for 6-7 years and have the same problems as everyone else. I am 67, very active and choose to continue working.

 

[cutieface1999]

I just filled out the initial questionnaire. Thanks.

 

[jools41]

i tried to do this survey but as i dont live in america i could not proceed with the survey

but at least i tried

 

[cutieface1999]

I filled out the survey and just received in the mail a form to fill out in order to receive the $10. The form requires me to give out my SSN. I don't want to. Anyone know if this is required and if so, why?

 

[pinupgirl1948]

Thankyou Eric-I filled out the survey and hope it will help someone

 

[pinupgirl1948]

I agree cutieface1999-You probably should not give out your SSN.I wonder why they need it??

 

[Out of the water closet]

Hi All,I filled out the UNC Patient Education Survey about two months ago. And I just recently returned from UNC where I participated in a second study that is trying to determine what causes IBS (The UNC center is on the cutting edge of IBS research, and they still don't know).I know this is a little bit off the topic, but I thought some of you might be inerested in hearing about this.I drove down from Philadelphia to Chapel Hill, NC to submit to 24 hours of physical tests and psychological questionnaires. My overnight stay included a Hydrogen breath test to check for both lactose intolerance and bacterial overgrowth in the small bowel, a flexible sigmoidoscopy to check for inflamation or abnormalities in my colon (fascinating to watch this on live TV), the insertion of a motility catheter to measure sensation in the sigmoid colon (they even fed me a greasy hamburger and fries and then recorded how my body reacted to a high-fat meal). There were also blood tests to screen for Celiac disease, seratonin levels, and C-Reactive proteins. They said a lot of these conditions can mimick the symptoms of IBS, but they also said that it's possible to have these conditions and still have IBS, too. Right now there are more questions than definitive answers. With this study, they're hoping to change that.Not only do they give volunteers a check for $250 (just think of how much Imodium you can buy for $250), but they also send you (at no charge) the test results so that you can discuss them with your physician or GI. If anyone has the time, interest, and ability to get to North Carolina, I highly recommend looking into this. Everybody I met at the center was friendly, respectful, and professional. The study will run for another year or two and they're still looking for more volunteers.

 

[pinupgirl1948]

Cutieface1999-I just took the questionare and they did not ask for my SSN .I wonder why you were asked.....Maybe they took that part out?-Wendi-

 

[julie b]

maybe they need your social to report the payment to the government for tax purposes. Also, grant money comes with tight restrictions and specific rules. A social assures that you are a real person, in America, and proves that you participated in the study and were not made up by the researchers for the purpose of changing their results or padding their statistics.