Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group New Back Pain Test

Here's my note to SAA:



Maybe if they get hit in the wallet, it will nudge them into action.

One should not have to be coached in how to answer the right way in order to expect a competent appraisal.

The facts are that I am a middle-aged woman who's back pain started at 23, but didn't become chronic until age 49 when an injury brought my spondy monster out of hiding. I don't take NSAIDS, because I have a fatal allergy to them, which was probably caused by almost 40 years of self medicating with them. I do feel periodic numbness in my limbs. And sometimes my neck hurts for weeks or months at a time. And for those answers a doctor might dismiss me as per that stupid SAA pre-diagnostic tool? Please give me a break!

Truthfully, because of American laws regarding big pharm + research, I automatically trust research coming out of other countries more than USA research.

Sad to say, but this is how I feel.

P.S. I encourage everyone to tell their doctors about how horrible this "tool" is and to please pass on the info to other doctors. The SAA had a Time Square megatron ad about this stupid test for criminy sakes!

Please tell me you've emailed SAA with a link to your's and Mig's book! Please?!?

Och. I want to slap those "researchers" who made that stupid test. *BLEEP*heads.

Right on!!! That's a GREAT idea, Erica!!!

I've written the SAA three separate e-mails re their traversty of a 'validated' back pain test. But I sure do think that letters from each and every one of us would be great, or, as Erica suggested a boiler plate letter that we all sign, sign with a n ote attached as to 'our' own story.

That, and a threat to withdraw from the association as well as...

The SAA must be made to change that crap test, change or remove entirely.

Am soooo upset by this biased 'test' that I have sent the information to my rheumatologist in the UK. Now, she is eminent in her field, has international recognition, and am 'hoping' that she 'might' be able to do summat about this so called 'test' for AS. Hope springs.

Meantime, trust that you guys are writng into the SAA direct...

ah, that's a good idea, from both the patient side and the doctor side, influence from either direction.

my result was positive

and I am POSITIVE that if I clicked on the links that it led to, someone would be wanting to sell me something very soon!

I told my rheumy about this today. She was not surprised On a related note she said they are seeing a huge increase of new female AS patients.

Interesting Holly. 'A *huge increase of new female AS patients'? I wonder why. Is it that these females are 'at last' getting a DX or is it summat in the Houston water...? @Smile'.

I heard back from SAA. What a load of b......s this 'multi-year research project' is. Here's to a good larf - excepting that it is sad:

"The BackPainTest.org screening tool is the culmination of a multi-year research project and has been scientifically validated and peer-reviewed. Both the Principal Investigator of the study (Michael Weisman, MD) and the Senior Author of the published screening tool manuscript (John Reveille, MD) are active members of the ASAS Group.

The SAA Screening Tool for Ankylosing Spondylitis was developed from clinically and radiologically diagnosed AS cases and therefore is designed to distinguish AS cases among Chronic Back Pain subjects and potentially identify undiagnosed patients with early stage AS. It is not weighted to identify more advanced disease. For this reason, it is quite possible that people who have a longstanding diagnosis will test negative.

Selecting the optimal case ascertainment tool threshold requires tradeoffs: increasing instrument sensitivity increases the probability of identifying patients with disease (and the ability to institute disease-altering therapies). However, this would increase the patient care burden on the rheumatologist due to additional unnecessary referrals, reduce quality of life and cost for those with false positive results, and raise the economic burden (additional medical evaluations) from the payer perspective. Results from our model revealed that sensitivities ranging from 69.6% to 90.2% were associated with specificities of 99.1% to 79.9%, respectively.

Lowering sensitivities reduced the portion of false-positive results seen by the provider. For instance, within this sensitivity/specificity range for the CBP population, the proportion of false-positive results seen by providers ranged from 20.3% to 80.9%. Using a clinically relevant, minimally sufficient sensitivity of 70% and specificity of 99% (a set of parameters agreed upon by the expert panel), the tool would have a predicted probability threshold of 66.86%.

From the published manuscript: Our case ascertainment tool for AS performed well (area under the curve [AUC] _ 0.937) compared with other commonly used screening tests: mammography for breast cancer (AUC _ 0.74), Papanicolaou smear for cervical cancer (AUC _ 0.93), and the combination of exercise echocardiography and 201T1 single-photon–emission computed tomography for coronary artery disease (AUC _ 0.78).

For more information about the sensitivity and specificity of the questionnaire, please see the published manuscript at http://www.backpaintest.org/as_screening_tool.pdf

Diann Peterson

Director of Communications"

--------------------##

A right load of cods-whallop.

Indeed:



So, the rheumatologists get referrals, and SAA gets membership.