The Braist Study

[flerc]

you seems to believe in the Pooka's Science version

Certainly the Nsf Forum Science version. Pooka1 is just only his official voice. Surely Worldwide Science Organizations will do it much better known.

[Pooka1]

No one ever talked about bracing kids who were not in the bracing window. We only talked about bracing kids who were. And we differed strongly on that topic.

I don't remember things the way you do. I stand on my analysis then and now.

[Pooka1]

Your position in the first case - Scoliscore - was that bracing those kids to keep them from progressing to 40 degrees was *unethical.* The only endpoint that mattered was keeping them out of surgery - reaching 40 degrees was fine. Your opinion in the second case - Braist - is now that surgical/40 degree endpoint is *not* acceptable and you have to be assured that bracing can keep them well below that.

Again, these populations are almost certainly different in terms of propensity to progress and, by association, amount of progression. You are mixing apples and oranges by conflating them.

It would help to know the percentage of the low Scoliscore kids who are in the bracing window >25* actually progressed >30*. I would bet it is a lower lower than the percentage of kids who are in the bracing window with unknown Scoliscores to progress >30* but I don't know that.

[hdugger]

I don't remember things the way you do. I stand on my analysis then and now.

You don't have to recall - we converse in the written word and that word is still writ.

You:

Given how Dr. Lonner immediately took that girl out of her brace once the Scoliscore came back at <41, I am guessing that surgeons might think it is unethical to brace these children.

Me:

"The scolioscore only measures the chance of progressing to surgical territory as an adolescent, is my understanding. It says nothing about the chance of progressing to surgical territory as an adult, or of living with a painful curve that only reached 40 degrees as an adolescent.

So, if all you're concerned about is whether your child is going to have to have surgery before their 18th birthday, then, by all means, rely solely on the scolioscore.

OTOH, if what you're concerned about is their lifelong risk of requiring surgery, or the risk of having a painful presurgical curve all of their life, then the scolioscore isn't going to be of any help at all."

You:

By the way hdugger, are your saying it was unethical for Lonner to take that girl out of brace with a Scoliscore of <41?

Me

I think doctors are over-concerned with the magical surgical cutoff number for adolescents, and under-concerned with the life-long course of the disease.

You:

Now what would you have surgeons do in the situation with a kid with a Scoliscore of <41 given the bracing literature?

. . .

Also, what is out there to help with "life-long course of the disease" aspects irrespective of Scoiscore? Please be specific as in something a surgeon can actually and plausibly tell a kid in real life at this moment."

and so on and so on

I'm going to drop this, because it really isn't important in the larger scheme of things what you and I think (at least, not important to anyone other than ourselves), and this side discussion is starting to distract from the more important issues.

Again, your positions don't have to make sense to me - it's not some law or something. But it makes it hard for me to seriously discuss your positions when everything is fluid other than the end point - what matters changes, what we consider changes, what makes a good study changes, what's unethical changes. The only constant is that, in the end, bracing is bad. It's like getting into a political discussion with someone who isn't really willing to consider any position other than their own. It just makes the discussion kind of lifeless. Again, it's not your job to amuse me, but it's my job to stop chugging away when I'm not learning or saying anything new.

[Pooka1]

hdugger

"The scolioscore only measures the chance of progressing to surgical territory as an adolescent, is my understanding. It says nothing about the chance of progressing to surgical territory as an adult, or of living with a painful curve that only reached 40 degrees as an adolescent.

No this is incorrect in one point.... surgical territory is >50* and Scoliscore low scores indicate a propensity to progress to <40*.

Again I say the percentage of low Scoliscore kids who reach near 40* is not going to be similar to the percentage of kids in BrAIST who make it there and beyond. The NNT among braced low Scoliscore kids is likely much higher than the NNT for BrAIST kids, even at the same angle I am guessing to the extent a low Scoliscore is protective against progression. Now there needs to be some more work on Scoliscore in my opinion after the prevalence of low, medium and high scores did not match that in the calibration set. I find that very troubling. But that is just about prevalence.

In that exchange you cited, you are tacitly arguing that some significantly large percentage of the Low Scoliscore kids will be near 40*. That does not comport with what is known about the prevalence of moderate curves like that compared to smaller curve.

Beyond that, I have never defended 40* as being protective against progression AFTER I saw that work showing the number is closer to 30*.

[flerc]

But even if another was the factor explaying the difference,

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.

It was not so uneven the distribution in both groups. The difference, similar to previous studies not talk really about nothing significative in bracing practice or other factor.
Clearly those researchers unknown the NSFF science version when they did this study.

[mariaf]

I'd still consider him a hero. He's doing everything in his power to make the best possible life for his son.

Not to minimize Dingo's efforts in any way, but I would add that ALL the parents on here are basically doing everything in their power to make the best possible life for their son or daughter, just not all in the same way. They are all heroes in my book.

[mariaf]

There has never been a scoliosis study about avoiding surgery for life, to the best of my knowledge. Not for bracing, not for surgery, not for anything. And, moreover, there will never be a randomized study that looks at this question, because you cannot assign children to non-bracing or non-surgery. So, that particular question will never be answered well. Parents will just have to deal with that.

Given that, this is the best information available for making a decision, and I don't see any better information coming down the pike.

Right, parents will have to digest the data, flawed or not depending on one's view, and apply it to their particular situation. After this study came out, there were parents who e-mailed me (these were parents of kids who had either VBS or tethering, and we keep in touch) to basically say they don't care if data is released saying bracing is 100% effective, they would NEVER brace another child because bracing was such a nightmare for their family. A lot of these braced kids (not all) were teenage girls, and having a daughter myself, I believe it was as bad as they described to me at the time, if not worse.

I'm sure, on the other end of the spectrum, there are parents who feel equally as strong that no matter how small the chance of success of bracing was determined to be, they would try it in an effort to avoid surgery, and of course, they are not wrong to feel that way. That is their personal choice.

The only thing that has always stuck out to me is that in the one group of parents (not wanting to brace regardless), there always seems to be a lot of parents who were either braced themselves or had a child who wore a brace (or both), for whatever that's worth.

[flerc]

we have some "google scholars" with no sense of knowing that they don't know. These people google a topic for 5 minutes and claim to have found the answer to long-standing scientific questions. These are the people making the dramatic, definitive truth claims.

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:

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:

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.

[Pooka1]

The only thing that has always stuck out to me is that in the one group of parents (not wanting to brace regardless), there always seems to be a lot of parents who were either braced themselves or had a child who wore a brace (or both), for whatever that's worth.

Good point.

And then there is my night-time braced daughter who still needed fusion. So having gone through a fusion, she told me she still would never have worn a 23/7 under any circumstances. Actually, I suspect she might have if braces allowed kids to avoid surgery for life but that will never been the case so it is a moot point.

[Pooka1]

I have faith in REAL Science Organizations.

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

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.

I have noticed that whether a person thinks a number is large or small tends to scale with whether they are ever in danger of actually having to wear a brace. There are exceptions... I am one of them. There are other exceptions on the group as Maria mentioned. I try to put myself in the shoes of these kids.

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

[hdugger]

Not to minimize Dingo's efforts in any way, but I would add that ALL the parents on here are basically doing everything in their power to make the best possible life for their son or daughter, just not all in the same way. They are all heroes in my book.

I wrote that in response to a post suggesting that he might be fair game for parody. When another parent on the forum is offered up for parody, I hope someone will likewise step up to defend them.

I'll note that I've had two people now try to correct/amend my assertion that I consider Dingo heroic, but no one else suggest that it might not be acceptable to parody him.

[Pooka1]

I'll note that I've had two people now try to correct/amend my assertion that I consider Dingo heroic, but no one else suggest that it might not be acceptable to parody him.

Well it's a ridiculously small sample size and so doesn't prove anything.

But beyond that, why do you think that is? Recall you once told me you don't even read his biochem stuff. Why not? And why wouldn't any flaws in the thinking on that not carry over to his analysis of the PT literature (35 total patients for TRS, not uniformly effective, double publishing and lucrative(?) gym contracts for the developer, etc. etc. etc.)? And is any of it helping many parents?

[hdugger]

You don't like me characterizing 25% of the braced group as not being a "large" percentage.

I believe the issue is your non-standard statement of risk. Bracing as a whole cuts the risk in half. Bracing more than 12 hours a day cuts the risk by something like 80%. Stating it that way allows other people to assess it in the same way as risk is normally assessed. Stating it the way you have runs the risk of confusing people about what the improvement actually is.

Again, you'd never describe a study where breast cancer was cut in half (from 10 to 5%) as "just increasing the non-risk risk by a small percentage of 5%" I mean, you could, but you wouldn't if you wanted to not confuse your listeners.

I have noticed that whether a person thinks a number is large or small tends to scale with whether they are ever in danger of actually having to wear a brace. ... I try to put myself in the shoes of these kids.

There is something insidiously unpleasant in this statement, and the many statements like it that I see scattered around the forum whenever the topic of bracing comes up. It troubled me enough that I wrote to the NSF and ended up leaving the forum because of the harm I feel that it does. I'm back on very limited terms, and on these terms, I'm participating *only* if I directly engage these kinds of statements when they come up. I don't imagine I'll be able to keep that up very long.

I will note that I have *never* seen a similar statement written about parents choosing surgery for their children. I have never seen someone suggest, as you have here, that parents are callously assessing the risk/benefit of surgery because they're not at risk of going under the knife.

Parents are faced with tough choices, no matter what treatment they choose for their child. And they are making those choices as best they can, with as much love, care, and understanding towards their children as they can. Whatever they choose, their child will suffer. And whatever they choose, their child will never be set back the way they were before they had scoliosis. There is no obvious right choice and no obvious right treatment.

Parents are not lovingly choosing surgery, but callously choosing bracing. They are loving choosing both. I would hope that both choices would be respected, and that both sets of parents would feel equally welcomed and supported.

[Pooka1]

Bracing as a whole cuts the risk in half. Bracing more than 12 hours a day cuts the risk by something like 80%.

It cuts the risk AT THE POINT OF MATURITY. Leaving off that part is highly misleading because people will assume it means avoiding surgery for life. We can't suppose that until we see the final curve measurements. Note Dr. Hey's blog about "successful" brace cases who needs fusion, sometimes as early as young adults. I think everyone would agree that the "successes" that are >40* and greater than 45* may or may not be actual successes.

Again, you'd never describe a study where breast cancer was cut in half (from 10 to 5%) as "just increasing the non-risk risk by a small percentage of 5%" I mean, you could, but you wouldn't if you wanted to not confuse your listeners.

I would if the treatment was as hard as bracing.

I will note that I have *never* seen a similar statement written about parents choosing surgery for their children. I have never seen someone suggest, as you have here, that parents are callously assessing the risk/benefit of surgery because they're not at risk of going under the knife.

You say that like these parents have a choice. They do not. Bracing is a choice. That's something you never seem to acknowledge. It is cruel to lump the surgical decision which really isn't a decision in with an actual decision like whether to brace. These parents do NOT have the luxury of making a decision that those with kids in bracing range have. That is insensitive in the extreme.