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AS and Quality of Life Measurements
#264846 03/12/14 04:43 PM
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Sean O Offline OP
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What's your Quality of Life Score

I was looking at some quality of life measurements for people with AS and was curious where I placed. I think I am somewhat average, neither a mild nor a severe case.

Anyway I took one of the standard tests (which is considered fairly reliable according to the research) and my score in total on all the parts was 36.

Anyone want to try the test and see how they score?


www.astretch.co.uk/EASi-QoL20items4domainsTOPCOPY.pdf


Male, mid 50s, Dx Reactive Arthritis 1981. AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Some bowel issues, anemia. Inflammation of the joints in hands and feet.
Re: AS and Quality of Life Measurements
Sean O #264857 03/12/14 09:21 PM
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Thats a bit depressing. My score is 48, but then I guess thats a direct result of having little or no treatment (intermittent short courses of steroids only)

There is also the BASDAI and BASFI. last time I checked I scored 6.4 on the BASDAI (active disease) and 8.5 on the BASFI (functional impairment). I think thats a fairly consistent result for me. Just wish I could get onto some decent treatment.

They seem to use the BASDAI and BASFI in the UK to measure disease activity and functional impairment, but less so the BASMI now, as I don't think there is so much confidence that BASMI is consistent across different doctors - thats the metrology index that measures limitations of spinal movement etc. Seems that the patient-assessed BASDAI is more reliable in showing changes.

I tend to do the online BASDAI/BASFI just before a rheumie appointment and take the results along with me. I will also do it immediately before trying new treatment.


Cauda equina type neurogenic bladder problems. Coeliac disease. Sicca syndrome. Ataxic gait and use crutches. Non-specific gut problems. Current treatment: Low dose naltrexone, low starch diet (Guts shredded by NSAIDs. Previously diclofenac worked well, not eligible for anti-tnfs, hypersensitivity to SSZ). Also short bursts of pred for bad flares
Re: AS and Quality of Life Measurements
Sean O #264863 03/12/14 10:44 PM
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cemc, I also thought immediately of the Bath indices.

The BASDAI (Bath Ankylosing Spondylitis Disease Activity Index) is here:
http://basdai.com/BASDAI.php

and the BASFI (Bath Ankylosing Spondylitis Functional Index) is here:
http://basdai.com/BASFI.php

Both are online "tests" that will spit out your score at the end.

Funny that someone felt the need to develop this EASi-QoL when a similar validated tool is already out there, the AS QOL:
http://ard.bmj.com/content/suppl/2002/12/20/62.1.20.DC1/62120Appendices.pdf

Not sure if I am "allowed" to take these as I don't have the A, just the S grin

Re: AS and Quality of Life Measurements
Sean O #264864 03/12/14 11:15 PM
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I think the AS QOL is less useful because it is all yes/no questions. I guess I liked the EAS-QOL because it asked you about interfering with work/concentrating.

Apparently there are a lot of articles about the reliability of all of the tests but I did not read them.


Male, mid 50s, Dx Reactive Arthritis 1981. AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Some bowel issues, anemia. Inflammation of the joints in hands and feet.
Re: AS and Quality of Life Measurements
Sean O #264875 03/13/14 04:59 AM
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Yeah, I hear ya, Sean. I did see the article where they validated the EASi-QoL compared to other tools, including the AS-QOL. FWIW my score on the EASi-QoL was 12 (out of max possible 80) and on the AS-QOL it was 2 (out of max possible 18). If changed to percentages those are pretty similar but I'm sure it's not as simple as a linear extrapolation smile

I think either one of them is adequate, though, for the primary use I see for them: helping folks communicate effectively with our docs. (I doubt I'm the only one who feels no need to assign a numeric score to my decrepitude! LOL!) The questions these tools ask can help us prepare for conversations, to translate what we feel, how we experience our days, into specific needs we can vocalize and that our doctors can respond to and may even be able to address. It's similar to the Mankoski pain scale - even though that's not a validated tool, I (and my rheumy!) have found it very useful for "calibration" as it has descriptions unlike the typical 1-10 numeric rating scale that's so often requested when we do the paperwork at the doc's office.

Thanks for bringing this to the fore so others can know about it and use it!

Re: AS and Quality of Life Measurements
Sean O #264889 03/13/14 02:38 PM
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Interesting survey, thank you for sharing. I ran the survey twice. The first time as I am currently (using TNF-i and NSAID) and the second as I remember feeling (using NSAID only) before I started my treatment.

With TNF-i: 9
How I remember feeling without: 50 (Caveat: I was referencing times when I was experiencing flares, so there would be some periods with a lower score I suppose).

It really makes me appreciate our modern medicine, doctors, support, etc. and hope that everyone finds a path toward a higher quality of life!

Re: AS and Quality of Life Measurements
Sean O #264894 03/13/14 04:03 PM
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I was somewhere in the 20's. I would have scored much differently earlier on; not only is my treatment effective, but honestly I have adapted so much over the years that things don't bother me even though I have restricted ROM.


46, diagnosed with AS in early 2005 and on TNF-blockers since then: They have been miracle drugs for me. On Enbrel from spring 2005 to Nov 2008. On Humira from Nov 2008 to present. Baclofen and OTC anti-inflammatories as needed.

"You must be the change you wish to see in the world." --Gandhi
Re: AS and Quality of Life Measurements
Sean O #264903 03/13/14 05:47 PM
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I have a question that may or may not be related. And I know I should probably be asking the dr, but here goes. When I was first diagnosed, the rheumy said you have AS with psoriasis and uveitis. When I read his reports they sounded less definite. I asked my eye dr, since she was the one who referred me to the rheumy and they were in communication, how sure is he about what is going on? She said very sure, you scored 9 out of 10. I have never been told what measure was used. Do any of you know what this means? I have been confused for over a year.


Age 61. AS dx'd at age 57
HLA-B27+,iritis/uveitis periodically since 1970, diabetic
Meds. naproxen and muscle relaxer(as needed)
Re: AS and Quality of Life Measurements
Sean O #264958 03/14/14 09:11 PM
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Interesting test. I scored a 38. I know I'm able to do a lot more when my pain meds are working. I don't want to think about what my score would be without them. :-/


Amy

27 years old
AS diagnosis 2013; neck pain for seven or eight years, and spreading multiple-joint pain for about two years
Also: Fibromyalgia, Hashimoto's, hypoglycemia, Raynaud's phenomenon
Meds: Remicade, Norco (10-325 mg), Gabapentin, allergy shots, Prozac, Synthroid (25-50 mcg)
Re: AS and Quality of Life Measurements
Sean O #264976 03/15/14 04:26 AM
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53, this is with improvement with Humira. I decided to retake it based on how I believe I felt before taking Humira and Neproxen, 69. So that's like a 23% reduction, well it's nice to know that I probably still have some ways to go. I'm at almost 6 weeks on Humira.


Newly diagnosed AS. 4 Years of disfunction. Current Meds: Humira, Neproxen, Baclofen, as well as other over the counter stuff. Rheumatologist says I have other co-occuring conditions, I'm sure fibromyalgia is one of them.

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