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How many of you know your Crohn's Disease Activity Index (CDAI)

Has your CDAI ever come up in discussion with your Gastroenterologist

  • Yes, CDAI has been mentioned

    Votes: 11 7.9%
  • No, I've never heard of it before

    Votes: 129 92.1%

  • Total voters
    140

David

Co-Founder
Location
Naples, Florida
The Crohn's Disease Activity Index (CDAI) is a tool that allows for the quantifying of symptoms of Crohn's Disease. I'm curious how many of you have ever had this mentioned to you by your Gastroenterologist.

Thanks :)

*edit* March 29th: We have a couple wonderful doctors watching this thread who are hoping to hold a clinical trial and are very interested in whether CDAI should be used or not.

Those of you who DO know your CDAI, if you'd be willing to respond stating what country you're in, that would be helpful as well. If you're not comfortable doing so, that's quite ok :)
 

DustyKat

Super Moderator
In Australia, where the biologics are government funded, the CDAI is used as one of the criteria that must be met in order to receive approval, so the GI and Crohn's specialist did discuss it with me. It is also then used as a indicator of treatment response for continued use.

From my own children's experiences I personally think it weighs too heavily into the misconceptions that surround IBD. Taking it from the perspective of an initial diagnosis of someone with small bowel Crohn's only, two of the eight criteria refer to diarrhoea and the EIM's mentioned are very limited. Since EIM's are more frequent for those with large bowel involvement anyway, then all these factors combined put those with Ileal Crohn's on the back foot from the outset.

Dusty. :)
 
I agree. I have heard about the cdai but not from my gastro, and I don't think it would be as relevant given that technically I was in remission when I was admitted to hospital (twice), as my only symptoms were abdo pain (severe, probably on 5 days out the week- scoring 105) and vomiting (not covered), and feeling a bit crummy (not scoring much at all).

In fact, I thought I had a stomach bug until it passed the week long mark, and the pain was so bad I couldn't do anything except cry!
 
I have heard of it (and calculated my own) because it's still considered the "gold standard" of outcome measures in studies, but I've never had it used in an office visit. I totally agree with Dusty and others though -- doesn't quite get at the symptoms of someone with ileal Crohn's. Personally I can have little pain, diarrhea, and EIMs right up until I have enough inflammation to cause partial obstructions. And then I guess when you start out with a low score it's hard to get down to the score you need to determine treatment response!
 

David

Co-Founder
Location
Naples, Florida
Bump for more responses. We have a couple wonderful doctors watching this thread who are hoping to hold a clinical trial and are very interested in whether CDAI should be used or not.

Those of you who DO know your CDAI, if you'd be willing to respond stating what country you're in, that would be helpful as well. If you're not comfortable doing so, that's quite ok :)
 

Entchen

Chief Dandelion Picker
Hiya:

I have heard of this, but it has not been discussed with me at a GI appointment. That's 1/2 of Part II, so that's the number of selected. :smile:
 
I don't know what this is. Does it have any other possible names? At every doctor's visit I fill out a whole bunch of sheets that give me index values, like the SIBDQ and Harvey Bradshaw, and a few others that I don't remember the names of.
 

DustyKat

Super Moderator
Emily, this is the CDAI...

http://www.medicareaustralia.gov.au/provider/pbs/drugs1/files/4198_ACDCI_25.10.07.pdf

@David. The other thing that would need to be considered when using the index is what is normal at the outset. As I stated earlier there is a reliance on diarrhoea as being an indicator of active disease and how that misrepresents Ileal Crohn's. Well on the other side of the coin, for those that have had ileocaecal resections loose stools and anti-diarrhoeals can become a way of life independent of disease activity.

Dusty. :)
 

Angrybird

Moderator
Location
Hertfordshire
Hi, I have never heard of this until today, the only score sheet I have ever done was with the rheumy doc to see if I had enough 'ticks' for Lupus - turned out it was an allergic reaction to Remicade. Do you know if it's better to go through this whilst in full flare or during a quiet time or both to compare?
 
Hmmm...I just looked it over and can't say that I would find it helpful. Izz's CRP tripled, her disease is severe throughout her large intestine, her pain, while intermittent (5-10 episodes daily) cripples her throughout the day, and she is in the restroom at least 7 times daily, including nocturnal visits. Her doc is preparing us for a colectomy, and I don't believe her score reflects this.
 
I have heard of it and calculated it several times myself but never been asked about it by my GI.
In the humira booklet is the Harvey Bradshaw index instead so have to complete this at each injection.
 
My GI doc has never talked about CDAI. However, I do a ton of research on Crohn's and have read a lot about CDAI. I've calculated my CDAI using the online calculators - I"m in a full drug free remission using only SCD, so my CDAI is 0.
 

Catherine

Moderator
I hadn't heard of CDAI, but used the online calculator on this thread.

Sarah index was 64 at the time on dx in January. Now would be 10.
 
I thought this was interesting - I mean, it related to a lot of my symptoms and experiences, at least - but more interesting because I've never heard of anything that quantified IBD symptoms in concrete terms like that. I wish there were more criteria since this disease is so complex.
 
do know my CDAI and monitor everyday on a spreadsheet, but not brought up by NHS, I found on the net and wanted a benchmark to track over time, currently around 60 but was prob 180 this time last year...
 
Mine was 348 before starting Humira 6 weeks ago - but what I dont like about the index is that it is biased towards crohnnies with D or loose stools not crohnnies with consitipation. I always have to tell the GI that you need to remember this fact when you are making your calculations. It should be based on the Bristol poo chart as shitting pellets or getting compacted is just as bad for crohnnies as the big D.
 

annawato

Moderator
Staff member
In Australia so see it each time inflix approval needed. Relys too much on diarrhoea which for me is controlled by pain killers i'm on. Also only looks at a 2 week window - I could be shocking beforehand but then improve just when the cdai is done. Not sure how they can improve on it and it at least provides some info. Better then nothing. I estimated my cdai as 438, guessing what crp is,at he moment - not sure how this reflects severity but am presently in hospital with abscesses and inflammation of small bowel - and picked up c diff too. So cdai is being skewed by painkillers and anti d's. Just needs to be used as one tool in the gi's arsenal of not much else. haha
 
I'm familiar with CDAI only because I've come across it while reading research studies. Neither one of the GIs I've seen has ever mentioned it. I scored a 41.
 
my CDAI is 226 and I'm in Australia. I think dusty is VERY correct though.. it really does rely too much on D.. as one of the options was 'loose stool OR D' I went with the loose ;-D

that was calculated using this cdai http://www.ibdaustralia.org/cdai/

and this one http://www.ibdjohn.com/cdai/ the score is CDAI = 135.7

and 9 on this one http://www.gastrotraining.com/calculators/harvey-bradshaw-index-hbi

I have NO idea what these scores mean so am off to investigate
A little late perhaps, but as the author of that first calculator page linked (now at www.ibdsupport.org.au/cdai-calculator) I may be able to shed some light on that :)

My script is written primarily for the Australian Medicare system, which uses a slightly modified CDAI for eligibility for publicly funded access to biologics. However, it turns out all they've done is actually add a maximum deduction of 10 points if you're overweight, which in my script can be disabled with a checkbox next to the weight section.

With the standard CDAI system, remission is typically accepted to be a score below 150, while a score above 300 is considered a flare, but other scores eg 200, 220 or 250 may be used as cutoffs for eligibility to clinical trials etc

The site www.ibdjohn.com/cdai (as used in the wiki) uses an earlier form of the CDAI which is not [as] widely recognised, and results in significantly lower scores than the typically accepted CDAI. That said, it's fine to use and arguably better if all you're after is a relative score to track your progress, but it's not going to directly correlate with the scores that people may use.

The Harvey Bradshaw index is a different scale that I'm not familiar with, but these two do seem to be the most well known and used of the scores for IBD. Though note as the name may suggest, CDAI is not really intended for use in IBDs other than CD, which can be problematic.

Unfortunately all these scales are far from perfect, and as noted by others the CDAI depends heavily on D when most of us may instead suffer from C which is harder to quantify. Also, the "general well-being" section is highly subjective and is responsible for a significant portion of the final score.
 
ACCORDING TO THE LINK POSTED BY DAVID MINE IS 266.528

I have not hear of this and it is probably because I live in Mississippi, U.S.A.

Also I have no clue what my hemocrat is so that may have influenced the score a bit as well.
 
Here is an online index calculator...

http://www.ibdjohn.com/cdai/
According to that calculator, I'm at a 7. I recalculated a couple times to account for good days and "bad". It bounced around to 0, 7, and 12. I'd have to say these days since starting LDN I'm typically 0 but I think pre-LDN my CDAI was low to begin with.

I've never had CDAI mentioned to me.

I don't think it's very thorough because it only asks about loose stool and not constipation.

I found two tests that included hematocrit from this year and used those.

Oh yeah... and I'm in the US.
 
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Catherine

Moderator
I think maybe I hate this index, Sarah is now 33, maybe not responsive to aza and maybe developing a fissure and at this stage doesnot qualify for biologics?.
 
I think maybe I hate this index, Sarah is now 33, maybe not responsive to aza and maybe developing a fissure and at this stage doesnot qualify for biologics?.
Actually, if she is under 18, Medicare use the PCDAI for paediatric patients, which is a totally different scale, and a much more thorough assessment than the regular CDAI discussed here. We hope to have a calculator for the PCDAI on our site early next year, but for now, you can at least see the paper form at the bottom of http://www.medicareaustralia.gov.au/provider/pbs/drugs1/crohns.jsp - I haven't had a chance to check if any of the online calculators for this are valid, but for Medicare you want to have a score of 30 or more to start treatment with the TNFα drugs.

- Stefan
the guy who wrote the interactive CDAI calculator at http://www.ibdsupport.org.au/cdai-calculator
 

DustyKat

Super Moderator
Hey Catherine,

This is the Medicare application form for Remicade for 6-17 year olds.

It states that the CDAI number is equal to or greater than 30, so Sarah's CDAI is high enough.

Dusty. :)
 

Catherine

Moderator
Thank Stefan, she is 17. Will test out the calculator. Sorry in a funny mood, just got a sms from the gi that her mri is odd and needs to be discussed with radiologist?
 
Hey Catherine,
It states that the CDAI number is equal to or greater than 30, so Sarah's CDAI is high enough.
Not necessarily true, I assume Catherine posted a CDAI result of 33, which has no correlation to the PCDAI which is referenced by Medicare for paediatrics.
 
Bump for more responses. We have a couple wonderful doctors watching this thread who are hoping to hold a clinical trial and are very interested in whether CDAI should be used or not.

Those of you who DO know your CDAI, if you'd be willing to respond stating what country you're in, that would be helpful as well. If you're not comfortable doing so, that's quite ok :)
I dont know my CDAI, or how to calculate it - but interested in the study if someone can give me the information.
 
I just realised i didn't actually answer the initial question, so since being in drug induced remission I've had CDAI scores of about 70-110 as expected. However at my worst, which was luckily when I was relying on a high CDAI score to get access to the TNF drugs under Australia's Medicare system, I scored about 450, largely due to maximum points for well-being as I was stuck in hospital on hydrocort, and that despite being someone that typically suffers from C, I genuinely had bad D for some reason during that admission too, possibly a medication issue,

So, I have no real problem with the CDAI as one of the many diagnostic tools used to judge illness, preferably alongside IBDQ and others, but due to in particular the reliance on D instead of C, and the subjectivity of the well-being section, I do not believe it should be used as the sole scale to judge illness severity, for a clinical trial or otherwise.

There's at least one promising study taking place at the moment to create a more extensive disability assessment for IBD intended to address these concenrs, and I saw a paper being presented assessing this just last month, I'll try and remember to post it here once it's published.

2
 
I haven't heard of this but it is very interesting! It would have been nice to know about it to keep it in a daily log (along with my weight and temp)

102 today, from what I remember 1214.3 at the worst... (Using idbjohn link) amazing what going to the bathroom 3 times a hour * 1week does for that score!

Neat to see something that provides quantification!!
 
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Cdai

WIKIPEDIA: I had to look it up! .... The Crohn's Disease Activity Index or CDAI is a research tool used to quantify the symptoms of patients with Crohn's disease. This is of importance in research studies done on medications used to treat Crohn's disease; most major studies on newer medications use the CDAI in order to define response or remission of disease. As Crohn's disease is a disease with a variety of symptoms that affect quality of life, the quantification of symptoms may be of secondary importance to a quantitative assessment of the effect on quality of life. This has been addressed by the Inflammatory Bowel Disease Questionnaire (IBDQ) and other indices of quality of life for patients with Crohn's disease

Just completed the CDAI online and scored 253 without the blood results - just sittin here on Axa surviving day to day up and down with noone seeming to be worried about me. Is 253+ good or bad???
 
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