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Posted 12/7/2007 8:12 PM (GMT 0)
Has anyone else taken the IBDQ?  I filled one out after my Remicade treatment this week.  The nurse said that the ultimate goal is a 170 or higher- that they consider that remission.  My score was 96, which she said was one of the lowest she'd seen.  It was kind of a shock, because I've been trying to convince myself that I'm "not that bad", even though I've felt so lousy.  After all, I haven't had to have any surgery yet, and I manage to drag myself out the door to work most of the time.  (Even though I'm mostly useless when I get there.)  I thought I'd gotten past the denial, but apparently not.

I've been chewing on all of this for a couple of days now.  On the one hand, I think it's good that I'm honest and clear with myself about what's going on with my body.  On the other hand, what difference does it make?  I'm doing everything I can to treat the disease, and I have no activities left to cut back on.  I don't even do more than the absolute basics around the house- a friend comes in a cleans for me twice a month.  The only thing left to cut back on is work, and I just can't do that.  I can't afford to go part-time either financially or for the insurance.  So all being honest really gets me is more depressed.  I think I prefer the rosy glow of denial.

Hm.  I've wandered off the original topic a bit.  Is anyone else familiar with the IBDQ?  What do you think of it- has it helped you gauge where you are with this DD?  If you know your score, do you mind sharing?

Thanks for "listening" to me yap.  Again.

Becky

Posted 12/7/2007 8:44 PM (GMT 0)
I don't think so.  Actually, I kind of felt like I was taking a quiz out of a magazine.  There were 30 or so questions, with 1-7 point answers.  The questions were along the lines of "I experience cramping: 1 always, 2 most of the time, 3 frequently, 4 some of the time, 5 occasionally, 6 rarely, 7 never."  The questions cover the physical, emotional, and social/lifestyle aspects of the disease.   I googled it the other day and one of the pages I found was selling copies for an outrageous amount of money, but I looked like they were selling the license for professional use, not to individual patients.
Posted 12/7/2007 8:44 PM (GMT 0)
OMG why would it cost that much money?? It seems like it's only a simple questionnaire?? this is what I found.. and scroll to the bottom..

http://www.flintbox.com/technology.asp?page=496
Posted 12/7/2007 8:51 PM (GMT 0)
Yeah, that's what I saw.  They're selling the rights to use the questionaire in clinical trials- patients don't pay to take it.

Posted 12/7/2007 9:08 PM (GMT 0)
doesn't it seem just a little silly? like - even just for the rights to own it? don't doctors pretty much ask you these questions??

i guess it determines you based on a numerical scale, but i have to read more on it to see how this score is valuable..

very interesting! thanks for sharing.
Posted 12/7/2007 9:11 PM (GMT 0)
I've taken the IDBQ many, many times. I don't know what my current scores are but in the past, while on Remicade, I've averaged 160 - 200. But, it is eye-opening to see how your candid answers to those questions change with disease activity. It's important to see your scores on a scale that is based on you, too. Remember it is subjective and it's hard to compare someone else's ratings of discomfort to your own as each person rates the same pain differently.

In the past I've had my IDBQ monitored while on Remicade or in a clinical trial.
Posted 12/8/2007 3:57 PM (GMT 0)
I've never seen or taken the IBDQ. I certainly hope it is of more value than the CDAI that they were using for clinical trials for so many years. The CDAI is a farce for far too many chronies to have any value.
Posted 12/8/2007 7:42 PM (GMT 0)
The CDAI is calculated by responses to questions regarding number of bms, pain and quality of life over a 7-day period in a diary. Then it factors in your weight, hematocit level, whether you've taken anything like lomotril, and whether you have any fissures/fistulas/masses, etc. It's very subjective, and although it's not a perfect marker, I don't believe it's completely useless. I used to believe it was until I got closer to seeing my scores on a regular basis. It does reflect where I am at. But, it's important to keep myself on my own scale. So, my score being the same as someone else's does not indicate that we are at the same level of disease activity. But, if my score drops by 100 points (as it did in the Prochymal trial) I know that I am showing improvement in more than just my mind.

IDBQ is a questionairre based on your reflection of the past two weeks. So, it's even more subjective!
Posted 12/9/2007 6:16 AM (GMT 0)
I'm sure that is what I took last month when I began the LDN clinical trial at Penn State. The questions are SOOOOOOOOOOOOOOOOOOOOO redundant! 5,000 dollars...and I thought the pharm companies were nailing people!
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