The Braist Study

[hdugger]

This particular study is about reaching 50* at maturity, not avoiding surgery for life.

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.

Do you count the kids who are >40* and >45* at maturity as likely being "successful" in terms of avoiding surgery for life? Isn't that what patients and parents care about as opposed to 50* at maturity?

Now we're at the right question, IMO. No, the important thing has been and always will be avoiding surgery for life. But that would mean a total shift in thinking for pediatric orthopedic surgeons, because it means that the desired endpoint is not <50 degrees at maturity but less than <30 or even 20 degrees. What does that mean in terms of treatment? It means we dump the whole watch-and-wait thing while we watch curves creep up and up and really focus our research on keeping small curves as small as possible with as little cost (both emotional and financial) as possible. It means we actually start putting money into things like torso rotation studies etc. and seeing if there isn't an easy and cheap way to keep kids as straight as possible.

But none of that has anything to do with this study. This study is just following the status quo set by pediatric orthopedic surgeons. The fault in endpoint is not in the study but in how scoliosis in children is conceptualized, treated, and followed. If you want to change that, you have to start with the pediatric orthopedic surgeons.

If . . . were . . . would that . . .

We're heading back into conjecture alley. Let's put off analyzing that data until we actually have that data.

[Pooka1]

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.

Wouldn't publishing the final curve measurements constitute "better information" for patients and parents than just the "success" percentages?

Now we're at the right question, IMO. No, the important thing has been and always will be avoiding surgery for life. But that would mean a total shift in thinking for pediatric orthopedic surgeons, because it means that the desired endpoint is not <50 degrees at maturity but less than <30 or even 20 degrees. What does that mean in terms of treatment? It means we dump the whole watch-and-wait thing while we watch curves creep up and up and really focus our research on keeping small curves as small as possible with as little cost (both emotional and financial) as possible. It means we actually start putting money into things like torso rotation studies etc. and seeing if there isn't an easy and cheap way to keep kids as straight as possible.

I agree with this.

But none of that has anything to do with this study. This study is just following the status quo set by pediatric orthopedic surgeons. The fault in endpoint is not in the study but in how scoliosis in children is conceptualized, treated, and followed. If you want to change that, you have to start with the pediatric orthopedic surgeons.

I would like to see a question o those questionnaires they did asking how many kids thought being <50* meant avoiding surgery for life and if that changed their approach to their treatment either way.

We're heading back into conjecture alley. Let's put off analyzing that data until we actually have that data.

The authors invited conjecture by not publishing obviously important data that has obvious bearing on the larger implications of their study. I am with Dr. McIntire on marveling that this is in a top shelf journal in the form it is in.

[hdugger]

The situation is so uncanny that it almost can't be parodied.

That's just as well. I can't imagine any benefit in parodying patients or parents of patients on a support forum.

Dingo has a very young child with a very serious problem, and he's moving heaven and earth to make things right for his son. I have nothing but the highest admiration for him.

[Pooka1]

Here's something that may or may not be important...

Within the intent to treat group, 60% of the observed group had a T or double major curve, the two curve types with the highest propensity to progress as far as I know. Yet the braced group only had 47% with these curve types.

[Pooka1]

That's just as well. I can't imagine any benefit in parodying patients or parents of patients on a support forum.

Yes let's just let nonsense go unopposed. Damn the other readers who don't know the score and are just looking for help on the interwebs. Serves them right for not being scoliosis researchers.

Nobody starts out with wholesale criticism. It has gotten to that point over MANY YEARS in lock-step with the recalcitrance to reason and ration on display.

[hdugger]

I would like to see a question o those questionnaires they did asking how many kids thought being <50* meant avoiding surgery for life and if that changed their approach to their treatment either way.

I'm going to note something which even I think is a little snippy, but I think it's also useful so I'll indulge.

When the Scoliscore study came out, I argued pretty hard that their endpoint of <40 degrees (I believe) by maturity was a bad one, because it sort of assumed that being 40 degrees at maturity was totally fine. You argued pretty hard *against* that position, felt that the test was useful even with that endpoint, felt that kids with low Scoliscors should be unbraced even if it meant that they might advance all the way to 40 degrees by maturity, actually felt that it was unethical *to* brace them even if it meant they might advance to 40 degrees, and so on.

Now, when we're discussing a bracing study, you're arguing that that same endpoint isn't acceptable and the only valuable data is how close these kids got to the endpoint.

I don't really have anything to say about that - I don't know why you felt like it was OK for kids to hit 40 degrees if they were left unbraced because they had a low Scoliscore while also feeling that it isn't OK for kids to hit 40 degrees in brace. I don't know, and I don't want to conjecture. It's really your business. But it does sometimes make it very hard to follow along with these arguments, because I feel like the sands keep shifting and what used to be down is the new up.

On the bracing study, I don't really have anything more to offer. In the big world of medical studies on scoliosis, this is one of the better ones, and I think it brings something new to the party. That's about as much as I can reasonably expect from any study in this area.

[Pooka1]

The dose-response curve is for the braced kids within the intent to treat group only which is fine. It is only for the first 6 months of wear by the way. Not sure how to interpret that. It may mean that bracing success was underestimated if brace wear fell off after 6 months.

Those are quartiles so the boundaries are not chosen by the researchers. That also explains why they didn't need to put the "n" on each bin on the graph.

So there is a total of 75 kids depicted on that graph as far as I can tell which is less than Katz et al. (2010) which was 100 kids IIRC. No matter.

That means only 18.75 kids ( ;-) ) wore the brace >17.7 hours, the duration associated with >90% success. That's a result in itself. When the numbers get that low, I like to know what curve types, curve magnitudes, etc. they had compared to those of the other quartiles. If the numbers get low enough, it starts to matter if that group happened through no fault of the researchers to be stacked with curves that were smaller and/or lumbar and less likely to progress. If the groups were large this would not be an issue.

[Pooka1]

I'm going to note something which even I think is a little snippy, but I think it's also useful so I'll indulge.

When the Scoliscore study came out, I argued pretty hard that their endpoint of <40 degrees (I believe) by maturity was a bad one, because it sort of assumed that being 40 degrees at maturity was totally fine. You argued pretty hard *against* that position, felt that the test was useful even with that endpoint, felt that kids with low Scoliscors should be unbraced even if it meant that they might advance all the way to 40 degrees by maturity, actually felt that it was unethical *to* brace them even if it meant they might advance to 40 degrees, and so on.

Now, when we're discussing a bracing study, you're arguing that that same endpoint isn't acceptable and the only valuable data is how close these kids got to the endpoint.

I don't really have anything to say about that - I don't know why you felt like it was OK for kids to hit 40 degrees if they were left unbraced because they had a low Scoliscore while also feeling that it isn't OK for kids to hit 40 degrees in brace. I don't know, and I don't want to conjecture. It's really your business. But it does sometimes make it very hard to follow along with these arguments, because I feel like the sands keep shifting and what used to be down is the new up.

On the bracing study, I don't really have anything more to offer. In the big world of medical studies on scoliosis, this is one of the better ones, and I think it brings something new to the party. That's about as much as I can reasonably expect from any study in this area.

Here's the critical difference... the Scoliscore population all had small curves. The test is only offered to kids with a "Mild Curve (10° - 25° Cobb angle)". Because most small curves do not progress, it can be reasonably inferred that most of those case outcomes were south of 40* were likely WAY south of 40*. I still think it is unethical to brace a low Scoliscore given the data because of this.

In BrAIST, they are starting with larger curves that are in the bracing range (25* to 40* though I think a few had curves <25*). The propensity to progress is greater. It can be reasonably inferred that some/many of the braced curves DID progress at least somewhat.

So basically the populations are very different between Scoliscore and BrAIST where one is not in the bracing window (less likely to progress) and one is (more likely to progress). Apples and oranges.

[Pooka1]

Essentially only a literal handful of the low Scoliscore kids might be expected to progress to near 40* whereas at least some (many more than some) of the braced kids would be expected to progress to near 40*.

There is a reason W&W is ethical and remains ethical though that reason seems lost on many.

[Pooka1]

Essentially, the NNT for the Scoliscore crowd would be way higher than the NNT for the braced crowd. Maybe a few orders of magnitude. That's where the ethics comes in.

[hdugger]

Here's the critical difference... the Scoliscore population all had small curves . . .
In BrAIST, they are starting with larger curves that are in the bracing range (25* to 40* though I think a few had curves <25*).

So basically the populations are very different between Scoliscore and BrAIST where one is not in the bracing window (less likely to progress) and one is (more likely to progress). Apples and oranges.

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.

While the Scoliscore kids are not in the bracing window when tested, they *are* in the bracing window when you decide whether or not to brace them. That was what our discussion was about. Your argument, if I remember the discussion title correctly, was "Is it unethical to brace a child with a low Scoliscore?" And you talked about being able to take these kids *not only in the bracing window but actually in braces* out of their braces since they wouldn't advance to surgery. So, we talking about kids in exactly the same curve magnitude and in exactly the same circumstances and with exactly the same endpoint in both cases. Apples and apples.

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.

You really are welcome to believe whatever you want to believe. If you want to hold both conflicting opinions at the same time and argue each one fiercely, that's fine. I'm not the thought police. I'm just noting that it makes my head spin so fast that my brains are likely to come flying out my ears.

So, just to try and keep my head glued on, let me confirm that I'm now talking with the Pooka for whom a 40 degree curve at maturity is completely unacceptable and not the Pooka I talked with last year for whom bracing a child to *keep* them from reaching 40 degrees at maturity was completely unacceptable.

[leahdragonfly]

Dingo has a very young child with a very serious problem, and he's moving heaven and earth to make things right for his son. I have nothing but the highest admiration for him.

Hi hdugger,

I will digress to comment on the above point for a moment. My son and Dingo's son are very similar in age, and they both had curves measured at almost 20 degrees at worst. Dingo has done a huge amount of exercise with his son, and I have allowed my son to eat dessert almost every night and wished fervently for his scoliosis to not get worse. Dingo's son currently has a curve still at 19 degrees. My son has a curve currently at 12 degrees. How do you explain this?

While I am extremely happy for Dingo and his son that his scoliosis has not gotten worse, his situation IN NO WAY proves anything at all about torso rotation, any more than my son's apparently regressing curve proves nothing AT ALL about daily dessert eating or fervent wishing. Dingo's situation does not make him any more of a hero than my son's situation does.

Now, back to our regular programming.

[hdugger]

Essentially only a literal handful of the low Scoliscore kids might be expected to progress to near 40* whereas at least some (many more than some) of the braced kids would be expected to progress to near 40*.

You're sort of separating and clumping people where they ought not to be separated and clumped.

You're talking about the NNT for the entire group of low Scoliscore patients, and then sort of conflating it with NNT for a treatment (bracing) which would only be offered to a fraction of these kids. Yes, you would absolutely way overtreat if you stuck every low Scoliscore kid in brace, especially since a whole bunch of them are way below the bracing window. No one has ever suggested that - why would you brace a kid with a 12 degree curve? We're *only,* have been only, talking about kids with a low Scolioscore PLUS a curve that's in the bracing window. Those are the only kids anyone would ever discuss bracing.

So, the low scoliscore kids "who have a big enough curve to brace" are not separate from "the braced kids." It's just one group. The braced kids in the Braist study are made up of a subset of low Scoliscore kids plus a subset of the medium and high kids. And there's only one question for all of them - are you treating *just* to keep them from advancing to surgery? Or are you treating for some other endpoint, like 30 degrees at maturity. If it's the latter, then you shouldn't be taking *any* of them out of their brace, no matter what their Scoliscore is. If it's the former, then the Braist study tells you everything you need to know. But it can't be emphatically both things.

[hdugger]

Now, back to our regular programming.

I'm glad your son is doing well. I was spared having to worry about my son until he was much older.

Heroic behavior isn't measured by success. If Dingo threw himself in front of a train to save his son, and failed or missed the tracks altogether, I'd still consider him a hero. He's doing everything in his power to make the best possible life for his son. That's all I can ask of anyone. I *hope* it all turns out well, but the results won't change my opinion of him one whit.

[flerc]

Dingo's situation does not make him any more of a hero than my son's situation does.

The difference is that Dingo opted for a solution where logics has to do, although might not be yet enough effectiveness evidence. He believes in the standard Science version, but you seems to believe in the Pooka's Science version where logics has not much place and only solutions showing a clear evidence of working may be taken in account, and of course 'clear evidence' is different and seems to be based in a new Maths, which surely may prove that eat dessert almost every night is the same effective as something as Torso Rotation or even more. Probably this new Science version is better, it works for you, good for you and yor son!