Response: How one surgeon discusses BrAIST

[Pooka1]

Here's a graph that I would like to see that I expect would open up some minds...

Plot ALL 116 kids where they have average brace wear data. So 116 data points. No summary stats.

X-axis -> average brace wear
Y-axis -> final curve measurement at 75% - 100% of growth completed.

Given the errors bars on the original graph, the scatter on this will be blinding, And we can instantly get a good idea of where these curves are ending up at maturity at least.

[hdugger]

May not need to repeat it If the long term

One possible misconception I see cropping up about the BrAIST study is that following these kids for a few years is likely to change *the relationship* between what's seen in the braced and unbraced kids.

So, I hear things about how we might evaluate the effectiveness of bracing differently if two years down the road some percentage of braced kids in the study go on to need surgery.

However, there's no reason to think that the braced kids are going to advance to surgery at a *greater* pace then the unbraced kids. In fact, quite the opposite. Half of the unbraced kids advanced to surgery at study end compared to just 3% of those wearing the brace as prescribed. I don't love engaging in examining data not in evidence, but there's every reason to think that, if these kids do advance to surgery in the next few years, they'll advance at roughly the same relative rate as they're advancing now. That is, the kids advancing to surgery over the next few years are likely to come disproportionately, from the unbraced group.

So, while continued data from this study may (slightly) effect the perceived effectiveness of bracing, it's far more likely to lower the overtreatment numbers as we see how many of these unbraced kids end up on the operating table at or near maturity. Just plugging in the most extreme numbers - if both the unbraced and 18-hour braced kids advance in the next few years exactly as they advanced within this study, in two years the total percentage of these compliant braced kids advancing to surgery will be 6% (3% of the remaining 97%) while 75% of the unbraced kids (50% times the remaining 50%) advance. Again, totally made up numbers, but numbers at least keeping proportionally to the information at hand. Given this expectation that the kids will advance in the future in the same manner that they're advancing now, I can't see how this future data would totally change our evaluation of bracing's effectiveness.

[Pooka1]

I should to do the probabilistic calculus but according the number of cases.. I suppose not lessser the 90%. I have also some data and is the 100%

Guess again.

[mariaf]

Oh, yes, absolutely. I only mentioned it in response to your comment that kids even had problems with this more common treatment. For my son, he was the only kid in college with braces. I had mine when I was 30, and was, likewise, the only person in my group wearing them. Sometimes you weather through these things even though you know that you're not going to look terrific wearing them. But I totally get that braces on one's teeth are common and braces on one's back are not. And being different is just very hard on teens.

My point is only that responses to these things is just so individual. If an individual kid is having a big problem, then you absolutely choose your course based on their response. I just wouldn't tell teens that everyone has a problem. Some teens do fine, emotionally, in braces.

Agreed, HD - some kids do amazingly well no matter what the challenge. I think it's fair to say these kids will do well in life because they can 'roll with the punches'.

And, yes, I know you get the difference between back braces and braces on one's teeth. I was just throwing that in there because I forgot to make that point in my original post, about how isolated a kid in a back brace might feel.

[hdugger]

I also feel certain that surgeons have at least some sense of the difficulty of brace treatment. Even if they're not living with these kids, they have to know that some percentage of the kids stop wearing them.

Given that, I can only assume that surgeons prescribe braces because, no matter how tough they understand the treatment to be, they feel that kids are better off in braces then on the operating table.

[hdugger]

I think braces on one's teeth is quite different from a back brace by virtue of the fact that most teens can look around and find other kids with braces on their teeth.

Oh, yes, absolutely. I only mentioned it in response to your comment that kids even had problems with this more common treatment. For my son, he was the only kid in college with braces. I had mine when I was 30, and was, likewise, the only person in my group wearing them. Sometimes you weather through these things even though you know that you're not going to look terrific wearing them. But I totally get that braces on one's teeth are common and braces on one's back are not. And being different is just very hard on teens.

My point is only that responses to these things is just so individual. If an individual kid is having a big problem, then you absolutely choose your course based on their response. I just wouldn't tell teens that everyone has a problem. Some teens do fine, emotionally, in braces.

[flerc]

I would be very circumspect in accusing my fellow parents of kids with scoliosis of lying. That's a pretty inflammatory thing to say about someone who is facing the same difficult situation we are all facing, and I've seen zero evidence that it is the case with either surgery or bracing. Bad things can happen to these kids, despite our best efforts. Parents guiding their kids through these choices have my complete support and understanding.

Since responsibles of this forum will never stops Pooka1 unmoral action here (certainly they helps her) this 'surgical forum' should to be shut down! I really hope to know about some external action soon.

[mariaf]

Maria - agreed, these things are tough on teens. A couple of the quotes I included go to that point.

My son wore braces on his teeth in college (he homeschooled - so no highschool for him). I'm sure he would rather not have, but he chose to because he wanted to avoid having problems with his teeth down the road. I've seen lots of teens on scoliosis boards making the same choice - it's hard, but they do it because they want to preserve their back down the road.

These kids (and their parents) have a choice to make. Given the growing pile of evidence of bracing's efficacy, what do you do with a 25 or 30 degree curve? Do you choose to take the hit during your high school years in order to protect your back, as my son did with his braces and his teeth? Or do you take the (apparently) 50/50 chance that you end up on the operating table or have your curve advance 10 or 20 degrees as a teen, and then start the clock on all of the degenerative changes that go along with having a large or fused curve?

Looking through the responses from surgeons (I ran through several pages on Google), they seem to really, really want to keep these kids off the operating table. I know they're not living with these teens, and I know that they're less privvy to the emotional cost of a brace, but the response I read all seemed to focus on that piece - how do I avoid putting this child through major surgery.

Kudos to your son for taking such a mature approach. I truly commend him. I guess it depends on the age and the individual child - and I'm sure there are kids at both ends of the spectrum.

I think braces on one's teeth is quite different from a back brace by virtue of the fact that most teens can look around and find other kids with braces on their teeth. Often a child in a back brace is the only one in school, or in their class, in that situation.

We talk a lot about surgeons recommending surgery because it's what they do, it's their way to 'fix' things - so I commend those who want to offer alternatives (i.e., bracing). However, I still think that many teens unfortunately won't be able to get past wanting to fit in with their peers. They tend to live in the here and now, at least the ones I have encountered over the years.

[hdugger]

Nobody braces to avoid surgery just until the point of maturity. .

And no one has surgery as a teen just to be able to walk out of the hospital. And yet, both things are measured "successful" in these narrow windows.

An effective treatment, in these cases, is not a guarantee for life. These kids don't have that guarantee. It's just an attempt to give them the best odds possible.

[hdugger]

I would be very circumspect in accusing my fellow parents of kids with scoliosis of lying. That's a pretty inflammatory thing to say about someone who is facing the same difficult situation we are all facing, and I've seen zero evidence that it is the case with either surgery or bracing. Bad things can happen to these kids, despite our best efforts. Parents guiding their kids through these choices have my complete support and understanding.

What can happen to parents, with all these treatments, is that they don't understand the long term picture. Clarifying that picture for all of these treatments rests on the surgeon. Surgeons need to be clear that a child with scoliosis is not dropped back into the normal risk pool regardless of what treatment is chosen. If they aren't making that clear, with surgery as with bracing, then they're not doing their job, IMO.

[flerc]

Yes. We have some data on this issue. What percentage would you guess?

I should to do the probabilistic calculus but according the number of cases.. I suppose not lessser the 90%. I have also some data and is the 100%

[Pooka1]

On repeating the BrAIST study: The terms of conducting a randomized study on a treatment is that it is not clear that the treatment is effective. Once a treatment has been deemed effective, as it has, now, in the case of bracing, you have a difficult hurdle convincing an ethics and safety board that there's a good reason to deny a child the effective treatment. That means that there's every chance that they won't, ethically, be permitted to replicate this study.

May not need to repeat it If the long term on these kids does not comport with saving them from surgery.

Nobody braces to avoid surgery just until the point of maturity. That's crazy as a concept but it is a perfectly acceptable and tractable research hypothesis to study. Apples and oranges.

In research, there are sometimes things that at numbers and you can measure them but they don't mean a whole lot. This may be one such study if the long term does not match the point at which to 75% to 100% of growth is done.

[Pooka1]

I'm not sure to be understanding. Do you say if those study would be repeated for other researchers how many of them would arrive to the same outcomes?

Yes. We have some data on this issue. What percentage would you guess?

[hdugger]

On repeating the BrAIST study: The terms of conducting a randomized study on a treatment is that it is not clear that the treatment is effective. Once a treatment has been deemed effective, as it has, now, in the case of bracing, you have a difficult hurdle convincing an ethics and safety board that there's a good reason to deny a child the effective treatment. That means that there's every chance that they won't, ethically, be permitted to replicate this study.

[Pooka1]

Unless you're arguing that surgeons *aren't* doing that - that they're making stupid, ill-informed choices -

Not surgeons. They understand the issues. Parents, not so much.

I really don't understand what your argument is.

You continually admit you don't understand my arguments yet you will comment as if you do with gay abandon.