The ethics of bracing (and PT) with a Scoliscore <41

[mariaf]

You are an advocate and a promoter of this test and surgical methods whether this is your field or not. It is obvious to anyone.......

Your advocacy is duly noted when you decide to drop the known, built-in, error rate and make the following claim......

How do you know those are the results today? How do you happen to have all this inside information, that any lay person wouldn't possibly have? Or do you just like to make up your claims?........

I'm afraid your promotion, once this is completely explained to patients and their parents, will fail.

Here we go again making it personal - it's a shame as it really takes away from the discussion.

[mariaf]

I don't respond to lots of things you say, because it's an endless battle. It doesn't mean I agree with you......

I don't surgeon bash. I am very happy that these orthopedic surgeons are out there. I have truly liked every single surgeon my daughter has been seen by. That's your defensiveness showing and I have often wondered why.

Just because you think bracing is unbearable, or conservative treatment doesn't work, lots of people disagree with you.

And yet again with personal attacks and putting words in people's mouths. Who said that you surgeon bash? Or that Sharon thinks bracing is unbearable?

Please try to stick to the facts without making it personal. You may not like some of us, or our opinions, but please try to keep those sentiments out of your posts, as they really have no place there and they add nothing to the discussion.

[Ballet Mom]

Here we go again making it personal - it's a shame as it really takes away from the discussion.

How about you put me on your ignore list and then you don't have to be bothered by what I have to say anymore. I am putting you on my ignore list and I won't have to be bothered by yours.

[mariaf]

I rest my case.

[Ballet Mom]

And yet again with personal attacks and putting words in people's mouths. Who said that you surgeon bash? Or that Sharon thinks bracing is unbearable?

Please try to stick to the facts without making it personal. You may not like some of us, or our opinions, but please try to keep those sentiments out of your posts, as they really have no place there and they add nothing to the discussion.

Has this comment been edited out by Pooka?

What makes you think they aren't being completely honest? What makes you think they don't know EXACTLY what Scoliscore measures and that they explain EXACTLY that? This is just more of your surgeon bashing because you don't like some research result on an emotional level.

And what EXACTLY is the alternative to that future for those subsurgical patients? You can't get blood from a stone and we are taking about an extremely hard treatment here. Just because you think Scoliscore is imperfect doesn't majick some effective conservative treatment into existence.

[hdugger]

That's *all* the evidence will allow someone to care about, no? Outside of the world of evidence, people can and do care about a lot of things including the points you mentioned.

Right - they created the scolioscore specifically to predict the risk of progressing to surgical territory by the end of adolescence. So, if that's all you're interested in, then it's a great test. If, OTOH, you have other interests, like your child's health throughout their life, then it's not very helpful.

I don't believe evidence dictates what people care about. It only dictates what they can accurately predict.

[Pooka1]

And yet again with personal attacks and putting words in people's mouths. Who said that you surgeon bash? Or that Sharon thinks bracing is unbearable?

Please try to stick to the facts without making it personal. You may not like some of us, or our opinions, but please try to keep those sentiments out of your posts, as they really have no place there and they add nothing to the discussion.

I really don't get it. She admitted (finally and grudgingly) that this isn't my field but then goes on claiming what I say might possibly matter to someone, anyone.

That doesn't follow. There is no rational reason for anyone to care what I say when they realize this isn't my field.

I am at a total loss. She can't have it both ways. That's why she was banging on and on and and on about this secretly being my field. Once she admits it isn't then there is no point.

[Pooka1]

Right - they created the scolioscore specifically to predict the risk of progressing to surgical territory by the end of adolescence. So, if that's all you're interested in, then it's a great test. If, OTOH, you have other interests, like your child's health throughout their life, then it's not very helpful.

Okay what *is* helpful for parents like you and me who are interested in our kids' health throughout their life?

[skevimc]

The reason I was thinking about this is Dr. McIntire suggested that avoiding surgery was not the only goal with conservative treatments which was complete news to me! Maybe he was only referring to PT and not to bracing. PT might still be ethical for these kids but it should be made absolutely clear that the risk of not doing it in terms of reaching surgical range is zero for most kids with small curves.

Assuming the above is true, I don't see how a study population could ever be assembled for bracing or PT among kids with a Scoliscore <41. I am guessing it is a game changer for conservative treatments wherein their potential study population has decreased a lot and they can only work with ~25% of kids with smaller curves.

I predict going forward that it will become increasingly harder and harder to publish a study on surgery avoidance without first showing that the subjects had a Scoliscore of >41. And when the measurement precision is considered in light of the relevant Cobb angle range in subjects with a Scoliscore <41, I don't think those studies will ever be conducted/published due to noise.

Scoliscore seems like it might be a real game changer if it stands.

The purpose of conservative management, as I think about it, is to stop progression. Certainly surgery is the primary fear of a curve that isn't stabilized, i.e. "If the curve gets larger we have to consider surgery". But I would imagine that a longer discussion about the risks or concerns about curves that progress but remain sub-surgical deals with several other factors of why someone might want treatment, e.g. cosmetic, QOL, pain, lung function, pregnancy.

I made that statement somewhat referring to those patients that, while they might have a low-moderate risk for progression/scoliscore, would still desire treatment to ensure as small of a curve as possible and/or the chance of reducing the curve. But as I thought about it some more, it seems like the same would apply to any patient.

From the validation study, in each of the 3 groups, there was ~50-60% of patients that had a mild/moderate curve with a scoliscore <41. The study groups the 10°-40° curves together so the number of patients with a low score but curve >30° isn't listed. As well, in two of the groups (spine surgery practice and males) there were 2 and 3 patients, respectively, that had a severe curve, >40° at risser <4 or 5 or >50° in an adult, but a score <41. An admittedly small number and so it would probably be fair to say that a majority of those with a score <41 would have a curve <30°, but that's just conjecture.

IMO, a surgeon removing a brace from a patient that had a score <41 isn't unethical. But I also wouldn't say it would be unethical for them to stay in a brace or seek PT if their curve is >30-35°. Now if we start a discussion about charging insurance or what promises are made about any given treatment or how small of a curve should be treated etc..., that's a different question and my answer would change depending on the specific question. But that's just my non-clinical opinion.

As far as doing research on kids with a score <41, I'd love to see results from the validation study of how well curve size correlates with score. Since the range of curves in that group would go from 10° up to 40° or 50°, I'd imagine the score doesn't correlate that well and there would be, as you mention, a large amount of noise. OTOH, it also seems like an interesting population to study. Kids that won't progress to surgery but still might develop a moderate curve would be a prime target for PT. At that point, you're not dealing with a progressing scoliosis that has an unchangeable genetic component to it but with a potentially progressing scoliosis that would appear to be due to other factors that are certainly correctable, e.g. rotational strength asymmetry (to use a completely random example).

The AIS-PT (Scoliscore) paper is pretty impressive to be sure. Even with the unknowns, it very clearly identifies those patients that have a low risk for progressing >40° which is pretty amazing. However, as has been said on here before, if it doesn't translate to adults avoiding surgery, then it's validity doesn't mean much. (I personally don't believe that but I haven't seen that mentioned very often in regards to the scoliscore.) An interesting study would be to do the genetic testing on a bunch of adults who had surgery to see what their scores are like. How many scores <180 are there? That would be a good one.

[mariaf]

I really don't get it. She admitted (finally and grudgingly) that this isn't my field but then goes on claiming what I say might possibly matter to someone, anyone.

That doesn't follow. There is no rational reason for anyone to care what I say when they realize this isn't my field.

Apparently, she cares quite a bit about what you, I and others have to say to the point of obsession. I don't get it either.

I have apparently been added to her ignore list so hopefully that will be the end of that.

Let's see.

[Pooka1]

Has this comment been edited out by Pooka?

You have accused me on more than one occasion about LYING about this being my field. That is over the line.

When you go over the line I try to supply a reason.

Can you see the difference?

You do bash surgeons. That is either true or not. If true, there is a reason.

None of that comes within a mile of CONSTANTLY accusing me of lying.

[hdugger]

ETA: Are you implying surgeons who take kids out of braces in the face of a low Scoliscore are not taking a broader look and considering the entire evidence picture?

My experience, both personal and in reading posts on this forum, is that 50 (or 60, in our case) by the end of adolescence is the magical number for pediatric orthopedic surgeons. That may well not be the correct picture, but it is the picture that I have.

I have no idea why that number is interesting, outside of the adolescent scoliosis realm.

If what you're interested in is having a child who is likely *never* to progress to surgery or not likely to have pain in adulthood, then the magic number should be 30.

It is odd. I don't think I've ever seen another disease where the split between what the pediatric group cares about and what the adult group cares about is so profound. It's as if all of those adult scoliosis patients just magically appeared when they were 18, and not as if those were exactly the same patients who pediatric surgeons were tracking for lo those many years.

The whole scolioscore thing just reinforces that split. Who cares if your kid just escapes surgery in their adolescence? Why would I pay $2000 to find that out?

[Ballet Mom]

You have accused me on more than one occasion about LYING about this being my field. That is over the line.

When you go over the line I try to supply a reason.

Can you see the difference?

You do bash surgeons. That is either true or not. If true, there is a reason.

None of that comes within a mile of CONSTANTLY accusing me of lying.

Give me an example of my saying you were lying about this being your field. I have never believed this was your field, otherwise I don't think you'd say things with such absolute certainty.

When have I bashed a surgeon? Ridiculous.

I'm saying you are advocating for this test and for surgical methods, for what reason...I haven't a clue. I question why you do this constantly. You place your advocacy pieces in places most likely to sway parents of scoliosis patients. Why is that?

Why do you think you have a better answer on how to treat scoliosis patients better than parents and patients in conjunction with the experience and wisdom of their surgeons?

[hdugger]

An interesting study would be to do the genetic testing on a bunch of adults who had surgery to see what their scores are like. How many scores <180 are there? That would be a good one.

Now *that* would be interesting. Or a measure relating pain in adult scoliosis patients (fused or unfused) to their scolioscore.

[hdugger]

Could we move the (profoundly uninteresting) discussion of personalities between mariaf, balletmom, and Pooka off-thread? Really, truly, madly and deeply - the rest of us DO NOT CARE HOW YOU FEEL ABOUT EACH OTHER and we'd like to focus on the health of our kids rather than your interpersonal issues.