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Thread: Wear your brace - It usually works if you wear it properly!

  1. #16
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    Found the paper

    http://early-onset-scoliosis.com/Doc...Compliance.pdf

    Apparently, the important variables (type of curve, magnitude of curve, etc.) for each group is in another paper:

    Takemitsu M, Bowen RJ, Rahman T, et al. Compliance monitoring of brace treatment for patients with idiopathic scoliosis. Spine. 2004;29: 2070–2074.)

    making it impossible to assess this paper on its own. It's interesting that not even one sentence about the key variables in this article. Looking at the data the way they did assumes compliance is a master variable which is something they are trying to prove. Circular.

    I'll try to find the other paper online.

    There is a WILD variation in prescribed wear time among these 34 patients:

    Prescribed regimens for the bracewearing schedule were 8 (nighttime) or 12 hours per day in the brace for patients with curves 30 degrees or less and 16, 20, or 23 hours per day for those with curves greater than 30 degrees.

    I am predicting the most compliant group were the ones wearing the brace only 8 hours at night and those wearing it only 12 hours during the day (as opposed to 16, 20, or 23 hours). And since it is highly likely that people with smaller curves were told to wear the brace less than people with larger curves, what prescribed wear time might reduce to is being a proxy for Cobb angle. I will be looking specifically for that in the other paper. And I question how they can relate any of this to outcome when the treatments are so wildly variant (among 34 patients no less).

    Importantly, ~21% of the 34 subjects went on to have fusion. There is not one word about how compliant they were. It would be an important result if some or most came from the compliant group. That would make sense if they had larger curves and suspected they might be moving into surgery territory. It would also be a confounder if the people most worried were most compliant--- it would skew the results. But one wonders why not even one sentence on which group they were in.

    This is a VERY short paper. Unless the journal set length constraints, I don't understand why this wasn't simply folded into the other paper with the "rubber-meets-the -road" results. If these results paint a different picture compared to the larger paper then I'm going to have some questions (as usual!).

    Last, they confirm the last measurements in this study were final "brace use." That is, ALL these numbers are in brace and they admit up front in the intro that no rigorous correlation between compliance and final outcome has been shown. Also, there is a penetrating glimpse into the obvious aspect of folks who wear the brace more have less IN BRACE progression. That is another reason why this paper should have been folded into the other in my opinion.

    As always, just a bunny opinion from the field as this is not my field.
    Last edited by Pooka1; 12-23-2009 at 07:55 AM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #17
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    Okay I found the abstract for the main article on this work and note that their conclusions deal ENTIRELY with brace compliance per se and they don't even try to relate the compliance to long term outcome because this is a prospective study.

    http://journals.lww.com/spinejournal...nt_for.19.aspx

    Conclusions. Patients with idiopathic scoliosis complied with 75% of prescribed regimen on average and overreported their hours of brace wear to their physician. Age affected compliance. There was no statistical difference in compliance among patients with different prescribed regimens. The present study confirms the need for a compliance monitor to accurately evaluate use and outcome of brace treatment.


    In other words, Pam was correct that the title of this thread bears no resemblance to the actual research objective or final conclusion.

    Last, apparently I was wrong about compliance correlating with number of hours or time of day/night the brace is worn. But that may be due to the other point I made... people who thought they were edging into surgery territory might be more compliant and be more willing to wear the brace for long hours.
    Last edited by Pooka1; 12-20-2009 at 01:07 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #18
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    By the way...

    It is now almost 5 years after this prospective study was published. The final results are in on outcome of compliance versus bracing efficicay among this cozy little group of 34. We know 7 of them were already fused so the question is what happened with the remaining 24 patients.

    Have the final outcome results been published?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #19
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    "Outcome"

    By the way, the word "outcome" used in the title of the 2005 paper is very misleading as most people, including to OP here, would assume it meant final outcome, NOT final IN BRACE measurement as is the case.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #20
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    For some reason, links aren't posting correctly. Sharon, the link you posted to the quoted "compliance study" was truncated and broken.

    At any rate, I was able to find the article by going to www.early-onset-scoliosis.com. After seeing who started that website, I'm not even remotely surprised that study is purported to have significance despite any real data.

    Ballet Mom, something rang familiar about your recent posts, comments to me, and the odd reference to a ca. 2007 thread a few weeks back: Up until now, I couldn't *quite* explain the sense of deja vu.

    Thanks for the missing puzzle piece.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


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  6. #21
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    Pam, I can't get to the article from the web site but the link should be clickable...

    http://early-onset-scoliosis.com/Doc...Compliance.pdf

    For some reason, I can't find the article from the top level directory but google finds it.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  7. #22
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    I just clicked on the link I just posted and it came up correctly. Can you try this link?
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #23
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    Quote Originally Posted by txmarinemom View Post
    At any rate, I was able to find the article by going to www.early-onset-scoliosis.com. After seeing who started that website, I'm not even remotely surprised that study is purported to have significance despite any real data.
    I'm sure she's trying her best. She just doesn't have the training or tools to approach the literature.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #24
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    Quote Originally Posted by Pooka1 View Post
    I just clicked on the link I just posted and it came up correctly. Can you try this link?
    Yep ... that one works. It could be on my end, but I'm not having problems with other sites ... and didn't have an issue here until the last few days.
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  10. #25
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    Quote Originally Posted by txmarinemom View Post
    At any rate, I was able to find the article by going to www.early-onset-scoliosis.com. After seeing who started that website, I'm not even remotely surprised that study is purported to have significance despite any real data.

    Ballet Mom, something rang familiar about your recent posts, comments to me, and the odd reference to a ca. 2007 thread a few weeks back: Up until now, I couldn't *quite* explain the sense of deja vu.

    Thanks for the missing puzzle piece.
    Oh my GOD!!!

    I come home from a weekend of Nutcracker performances by my ADVANCED ballet dancer daughter, and you're apparently accusing me of being the mother of what must be an eight or nine year old girl? Crazy stuff. (She's very cute, by the way)

    Amazingly enough, I used my own fingers and search engine to find that abstract on my own. I know it's hard to believe that more than one person could actually find information on something they're both interested in. I actually had to click every link on that site you linked to in order to finally find, with great difficulty, the entire research paper, but thanks for providing the entire paper for me...I had been looking for it without much luck.

    The reason I brought up the "odd reference" to the 2007 string, was not because I am the person you're accusing me of being, but because you were trying to mislead people into believing that your curve did not progress even though you weren't wearing your brace compliantly, by your own admission.

    I simply remembered from reading in the archives, that you had stated that you were diagnosed at 35 degrees and went back to find that statement in order to clarify your misleading comment.

    It is useless to get into the technicalities of the paper with you and Pooka, other than by saying that I did state that a much larger study, probably Braist, needed to be done to verify those results.

    Let me think, would I be more likely to believe the lead author of this study, a PhD in Mechanical Engineering who is striving to help children through the study and design of medical devices and the Head of the Pediatric Engineering Research Lab at A.I. duPont Hospital for Children and Associate Professor at Drexel University, or a programmer training to be a masseuse and her virtual friend, a wannabe PhD apparently trained in the so-called "scientific" methods of environmental "science".

    Or perhaps, the second doctor listed on this study, James Richard Bowen, Chairman of the Department of Pediatric Orthopaedics at the Alfred I. duPont Institute and Professor of Orthopaedics, Jefferson Medical College of Thomas Jefferson University.

    Hmmmmmm, not even a close call. You gals need to get a grip on your egos.

  11. #26
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    Quote Originally Posted by Pooka1 View Post
    I'm sure she's trying her best. She just doesn't have the training or tools to approach the literature.

    That from a wannabe PhD who quite clearly isn't one.

  12. #27
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    Ballet Mom,

    Given the state of the literature, you might try the same thing that I'm trying - collecting data points of those who have actually reduced their curve. The standard I'm applying for exercise is adolescent and adult scoliosis only (juvenile has too odd a course), a greater than 10 degree reduction, held for months or (preferrably) years, in a "significant" curve, which I'm counting as anything over 35 degrees.

    I suspect you'll find data points for bracing, as I have for exercise.

  13. #28
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    "Let" her curve? Doesn't that imply I necessarily have some way to stop it?


    Ups!!! I didn’t choose the correct word; English is not my main language.
    I only wanted to make you that question because reading your post, sometimes I have the impression that you wouldn’t give bracing a try, and new parents who come here, could make decisions basing on "your fact”, that bracing doesn’t work.
    2004: Daughter diagnosed at 13 L38º. Risser 0.
    Treatment: Cheneau brace
    2009: Brace free, 18 years old, Risser 5, L25º

  14. #29
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    Post of the month nomination

    Quote Originally Posted by AILEA View Post
    Ups!!!
    I expect it will win handily.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  15. #30
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    i think it is easier said than done wear your brace all the pain yes it should be better for you but its really harder than it sounds
    Diagonosed:age12
    and im still alright

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