The Braist Study

[Pooka1]

Essentially, that 25% can and will decrease over time. How much it decreases remains to be seen. How small does it need to get before you would admit only a small number were helped by bracing?

So essentially it is NOT 25% but something less.

And the NNT factor seems to always get short shrift.

[leahdragonfly]

Hi hdugger,

I have never criticized a parent for choosing to brace their child. I am not sure why there is some automatic assumption that someone such as myself, who wore a brace as a teen AND also have a child who wore a brace, is criticizing parents for choosing to brace their kids. The bracing discourse here is not about personal choices of parents, whatever those choices may be (i.e. surgery, bracing, exercise, ice cream eating, etc). There are no easy choices with scoliosis. Nobody is more heroic for choosing one therapy over another, nor should any parent be criticized for trying to make the best choices for their child.

What I am trying to discuss is how bracing is presented to parents and kids by doctors. I believe that is also Pooka's intention. The majority of doctors do not tell parents and kids the current evidence for or against bracing. This is one reason why BRAIST had such a hard time meeting enrollment, and finally had to offer a treatment-choice arm rather than randomization. Some people choose to become very offended by our concern that bracing is seriously over-prescribed for many kids who apparently will not benefit from it. And I have to agree with Pooka that it is generally not the parents of kids who might need a brace or surgery. It is the rather holier-than-thou types (who have no danger of a brace entering their home) who suggest bracing is no big deal and why all the objection to bracing many kids who do not need it.

Anyone who has worn a brace themselves or had a child who had to wear a brace knows it is a very difficult treatment, period. You will not find one child or teen out there who loves their brace and is happy they got one. Some teens even end up with panic attacks or major depression because of their brace. Others appear to accept it but suffer quietly inside every day. This is why I advocate for strenuous and accurate research to pinpoint which exact kids will benefit from bracing, and spare all the rest from a difficult, unnecessary treatment. My participation in this discussion is not about personal choices, it is all about giving each parent accurate info so they can make their own informed decision. Every medical treatment choice should be based on a fully informed decision.

[Pooka1]

Here is a mathematically accurate description of the published results of BrAIST...

I would honestly tell a child that the odds of not reaching 50* are the same as for reaching >50* and that the odds of wearing the brace needlessly are twice as high as both those other outcomes. Wearing the brace for no benefit is the most likely outcome BY FAR. Then I would explain the issue of final curve measurements when they are published and would help them guesstimate how much to reduce the 25% "success" rate to reflect that.

[hdugger]

But beyond that, why do you think that is?

Why do I think that people are comfortable with the idea of parodying another parent in a support forum? Well, that's a question I've asked myself a lot.

Recall that I majored in biological psychology and not clinical, so I don't really have the appropriate background. But, based on my experience as a forum moderator along with my cursory reading of pop psychology, I'd say it was a kind of disinhibition and acculturation towards behaviors which people would normally find shocking or unpleasant.

Or, to put it more simply, if people are dropped into a situation where parodying of a parent is treated as normal and acceptable, they begin to feel and behave as is that behavior is OK, even though they would never consider behaving that way in any other situation. It's a kind of cultural norm, specific in this case to this forum and this parent.

But, even with the cultural norm, people still need to explain to themselves why it's OK to behave in a way that they would otherwise find unacceptable. And the normal way of doing that is to understand somehow that the victim brought it on themselves.

In this case, the commonly agreed upon explanation is "parent does not read scientific literature in a certain way" = "I do not have to treat them the way I think people should normally be treated."

In the realm of "the victim brought it on themselves" that's a pretty unique explanation, but it seems to work here.

[Pooka1]

Gayle makes great points.

There is a space between an educated decision and an emotional decision. The size of that space should scale with the evidence in hand about the efficacy and difficulty of treatment options. I don't think it does at times and I am not going to criticize parents for having strong emotions. I am just saying kids have equally strong emotions and are on nearly equal footing with parents w.r.t. understanding the evidence simply because there isn't a lot of high quality evidence.

With every "marquee" bracing publication comes the declaration that the game is over and we can home home know and that bracing is effective. Remember that Shaunnessey (spelling?) that every loved and that hdugger mentioned upthread? It STILL hasn't been published last I checked. Perspective always. Remember Katz et al. (2010)? BrAIST wasn't halted when that came out. And even Nachemson who published some "definitive" work agreed to be on the panel for BrAIST. I am trying to make the point that scientists approach these things differently than lay people.

[Pooka1]

Why do I think that people are comfortable with the idea of parodying another parent in a support forum? Well, that's a question I've asked myself a lot.

How outrageous would a parent have to get in their ignorant claims in order for you to no longer remain silent? I assume there is some point where you would not be quiet. You remain quiet about the biochem stuff because you personally don't care. But maybe others do care.

Isn't this just a matter of different interests and differnt bullcrap tolerance levels?

I intensely dislike the constant crapping on honest researchers but that doesn't bother you. Other things bother you that don't bother me. So what? What is the point of constantly pointing that out?

[hdugger]

I have never criticized a parent for choosing to brace their child. I am not sure why there is some automatic assumption that someone such as myself, who wore a brace as a teen AND also have a child who wore a brace, is criticizing parents for choosing to brace their kids.

Here's a sample thread:

Dr. Hey deals with the fallout of parents lying about braces to kids -
http://www.scoliosis.org/forum/showt...braces-to-kids

about a braced child who progressed to surgery. This isn't a response to a holier-than-thou outsider, it is a forum member accusing a parent of lying to their child because their child progressed to surgery after wearing a brace.

And this is just one topic about bracing - there are lots and lots of others.

Now, find me a similar topic about surgery. I can't tell you how many people I've seen come in here who believed that their surgery as a teen would protect them for life, only to face more surgery as an adult. Have you ever heard it suggested that their parents *lied* to them about their surgery?

Why is it acceptable to suggest that parents are *lying* to their child because bracing failed to hold their curve? Can you imagine coming into this forum for the first time after being prescribed a brace by your doctor and running across that discussion? How would you feel? Would you feel like this was the sort of place where you'd be welcomed and supported? Or would you, naturally, assume that you'd be blamed, BLAMED!, if your effort to protect your child failed?

It is the rather holier-than-thou types (who have no danger of a brace entering their home) who suggest bracing is no big deal and why all the objection to bracing many kids who do not need it.

You're going to have to find me a post where some holier-than-thou-type suggests that bracing is no big deal. I've never seen one myself.

[flerc]

CARADURA!!! I have never seen another case as yours before!
Do you are talking about google searchers?
Is evident for anyone with enough science background why you didn't finish your demonstration about the non significantly uneven distribution:

Quote Originally Posted by Pooka1 View Post
First of all, it is only ~25% over and above the W&W group that were <50* at maturity. Not "so uneven". This number is not dissimilar to previous studies and so is not groundbreaking.
As you haven't such bacground, it wasn't obvious for you how much significant was it even without the increment given with the obvious analysis you began to do, believing it would decrease the odds instead of increase as of course happens:

Quote Originally Posted by Pooka1 View Post
What approximate percentage of the braced group was unnecessarily treated?

Is that percentage similar to past estimates of the approximate percentage of a braced group that appeared to be affected by the brace at least temporarily?

(Total = "unnecessarily braced" + "apparently affected at least temporarily" + "reached surgical range during treatment")
Surely someone tell you how wrong you was and you stopped it.

Of course noone REAL member here, that is , someone affected for the scoliosis problem, must to have a science background and training. But since you are the voice of this forum, talking in the name of science and worry because 'the science war' you should.

Of course you'll never recognise this, dishonesty is other property of fakers. You fulfills all of them.
This dangerous and bad intontioned forum cannot be changed from inside. I have faith in REAL Science Organizations.

Is there anyone on the forum who speaks from a "REAL" Science Organization in your opinion?

Specially new members may believe this is a Scientist forum. Is necessary explain why with all yours literally thousands of posts talking about why only people without science training may think in options different to surgery? Of course not.

And let me take among swing at what I think you are complaining about. I am not sure but this is my best guess...

You don't like me characterizing 25% of the braced group as not being a "large" percentage. Is that right? So basically half the kids were braced unnecessarily and a quarter needed surgery. So that leaves one quarter who were apparently helped by bracing at least until the point of maturity. I consider that a horrifyingly small number given the difficulty of the treatment and the likelihood that some of these kids with larger curves will need surgery at some point. YMMV.

If it like me or not,have not nothing to do. Is what it shows about your statistical background, but of course I expected some kind of explanation like this and I said why. But is enough obvious for everyone with enough Maths bacground what it shows, so continue giving other explanations like this if you want.
Just only one comment: If you may say is not my case is because we were noticed about her scoliosis when she was over 50º. Do you believe that if I was noticed when she was many degrees bellow, I was not at least considered the brace option if I would have the understanding (wright or wrong) I now have after these years analyzing the scoliosis issues?

If that isn't your point then I don't know what you are trying to say.

You don't understand what 'caradura' means? Sure you know about faker meaning..

[Pooka1]

Now, find me a similar topic about surgery. I can't tell you how many people I've seen come in here who believed that their surgery as a teen would protect them for life, only to face more surgery as an adult. Have you ever heard it suggested that their parents *lied* to them about their surgery?

Once again, these parents do NOT have a choice. Nobody can decide not to have a surgery on the basis of possibly needing another down the road because that doesn't obviate the need for the first surgery. This is beyond obvious. And I have never seen a child say that their parent told them it was likely one-stop UNLESS the surgeon told them directly. Absent that, they are probably silent about the need for future surgery unless the surgeon mentions it. There is no way a parent can know one way or another unless the surgeon tells them or unless they understand the literature.

On the other hand, we can well imagine parents cajoling their kids into wearing a brace by scaring them with the possibly of surgery. And you will never find a surgeon scaring kids into wearing a brace by mentioning surgery. Or at least I hope not given the evidence.

That's the difference.

[hdugger]

How outrageous would a parent have to get in their ignorant claims in order for you to no longer remain silent?

What would the parent of a sick young child have to do for me to find it acceptable to mock him in the support forum where he participates to discuss his child's problem? Wow, that's tough. Maybe if he started insulting my kid? That would probably set me off. I can't imagine that much else would.

I intensely dislike the constant crapping on honest researchers but that doesn't bother you.

Pooka on Dr. McIntyre

"Physical therapists are not trained in research. And as we have seen, even folks trained in research produce false results/conclusions a majority of the time. . . That paper is embarrassing. I am considering writing to the editors about it making the same points I made here. I'll report back if I do that and if I get a response. Exercise therapy might work but you wouldn't be able to determine that from that study design."

Pooka on (I think) Mooney but it could be McIntyre again

"I have not seen the entire report but at this point, this study appears to be among the worst that I have seen published in terms of extravagantly going beyond the results and wildly speculating without much if any ground to stand on. . . I am not trying to discourage you. I am saying the conclusions they reach in that study are obviously NOT supported by the data and I am floored it was published."

******

Again, it's hard to discuss things with you because up becomes down becomes up. In this case, constant crapping on honest researchers is so terrible that one parent must be laughed out of a support forum, and yet, at the same time, so totally acceptable that you routinely engage it in yourself. It makes it hard to seriously consider your strong positions, because I honestly have no idea what they are from minute to minute. The only thing I know, for sure, is that you believe bracing is bad and that Dingo is an idiot. Everything else is up for grabs.

[Pooka1]

I wrote that in response to a post suggesting that he might be fair game for parody.

Actually I didn't say that. I said it was impossible to parody him. So no parody is possible even if one wanted to do so.

[Pooka1]

Pooka on Dr. McIntyre

"Physical therapists are not trained in research. And as we have seen, even folks trained in research produce false results/conclusions a majority of the time. . . That paper is embarrassing. I am considering writing to the editors about it making the same points I made here. I'll report back if I do that and if I get a response. Exercise therapy might work but you wouldn't be able to determine that from that study design."

This was before I realized how hard it was do do a controlled study in this field. It is different. In fact Dr. McIntire's paper was singled out as one of the best in this field in many respects. ALso I am guessing I didn't know he had a PhD in that field at that point. That changes everything.

Pooka on (I think) Mooney but it could be McIntyre again

"I have not seen the entire report but at this point, this study appears to be among the worst that I have seen published in terms of extravagantly going beyond the results and wildly speculating without much if any ground to stand on. . . I am not trying to discourage you. I am saying the conclusions they reach in that study are obviously NOT supported by the data and I am floored it was published."

See above. I was blind-sided by the difficulty of doing a controlled study in this field. Perhaps you were born knowing that but I wasn't. Medical research is very different from other fields of research.

[Pooka1]

Pooka on Dr. McIntyre

Count up every statement I made, whether or not I later corrected it, and compare it to the actual CONSTANT crapping on researchers that goes on here from other quarters.

What are the relative counts?

[leahdragonfly]

If studies are showing that braces are unecessary used in a high percentage, they also shows greater chances to avoid surgery using it. Both studies conclusions should to be taken into account for parents evaluating the convenience of using braces or not . What would be really unethical is to leave parents without this non surgical option to avoid surgery.

Hdugger,

Here is one quick example in response to your request up-stream, this from flerc who is callous in suggesting wide-spread use of bracing even though the Braist researchers state their evidence shows that many kids are being braced unnecessarily.

Again I must point out that I never accused parents of lying to their kids. I object to doctors failing to give parents and kids full disclosure about the current state of bracing research, thus denying parents and kids the opportunity for truly informed consent. I do agree that many parents, probably out of fear and being underinformed, cajole or threaten their kids with the possibility of surgery if they don't wear their braces. This ends up being a huge mistake later on if the kids still progress to needing surgery, because by then the kids are terrified of the thought of surgery, due to their parents mistaken warnings.

[hdugger]

Count up every statement I made, whether or not I later corrected it, and compare it to the actual CONSTANT crapping on researchers that goes on here from other quarters.

Really, I haven't got that kind of time. I'm just pointing out that crapping on researchers appears to be completely acceptable in some cases and completely unacceptable in others. Dingo was slammed for his reading of research at exactly the same time as you were attacking the torso rotations researchers. So, again, it had nothing to do *at the time* with a feeling that researchers should always be respected.

And then there's this, from you, in this very topic in just the last few weeks:

"As I said, there is something funny going on here. I think many of the "successes" were >40* and even >45*. That is one possible explanation why they didn't publish the bottom line data. It smells of politics. Stopping the study early at the point it was stopped for the reasons stated is objectively bizarre as far as I can tell.

I fault the peer reviewers."

So, researchers are skewing/hiding their data because of some kind of political pressure/decision, and, again, peer reviewers are not doing their job by allowing these papers to be published. Dingo hasn't posted in months about anything other than his son, and you're *still* slamming researchers in a field which you, admittedly, know nothing about for reasons which are conjectural at best.

So, again, what are the specific rules that one needs to follow when discussing research? Because, as best I can determine, the rules are that researchers who you disagree with are idiots/unethetical and anyone who publishes their research isn't doing their job, while researchers you agree with must be treated with absolute and utter respect or face mocking and parody.