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

[Pooka1]

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.

Please don't lump Maria and I in there. There is no cause to do that.

[Ballet Mom]

Please don't lump Maria and I in there. There is no cause to do that.

.... lol ....

Sorry hdugger.

[hdugger]

Please don't lump Maria and I in there. There is no cause to do that.

From where I sit, it all looks exactly the same.

Here's my advice on how to edit posts (should you be interested): If you're discussing the idea, it's good. If you're talking about the other person, it's not.

[Pooka1]

From where I sit, it all looks exactly the same.

Yes but from where you sit, you think the biochemistry literature is more accessible to the bunnies than is the bracing literature.

Though you have irretrievably harmed your credibility with comments like that (smiley face), I think your advice about editing posts is well taken. (another smiley face!)

[mariaf]

From where I sit, it all looks exactly the same.

Here's my advice on how to edit posts (should you be interested): If you're discussing the idea, it's good. If you're talking about the other person, it's not.

Agreed about sticking to ideas.

If you go back and read, I have never accused BM or anyone else of surgeon bashing, etc. I have only retorted to defend myself or to ask that we leave personalities out of it.

If you read this and other posts, you will see that other members have asked BM to cease her inflammatory posts as well. So, let's be fair here.

[jrnyc]

OK, for a moment here, back to what i was saying about lifetime with scoli...

i recall that my curve was on the small side, before i was in my 20's, anyway...
since my thoracic is now 42, lumbar 61, i am guessing that as a teen my curve, which was probably just lumbar at the time, was somewhere in the 20's...
i think when that doc mentioned it to me for my college physical, when i was 16-17 years old, it was just a "heads up," and a "didn't anyone ever tell you this before?"...i didn't have a "regular" G.P., as i was terrified of doctors, so she hadn't seen me ever before, nor ever again...

i suspect the curve was lumbar, as i remember ballet turns getting more and more difficult for me to do, and always easier on one side than the other...waaaay easier...

i am thinking that it is important for doctors to discuss lifelong aspects of scoli, at least with the parents, if not with the kids/teens themselves....
kids often have a short term approach to things, whereas their parents could be looking at the lifelong aspects....not for pushing any kind of treatment, conservative or "radical,"...just for an awareness, at the very least....
because folks can end up with problems later on...sometimes bad problems...also, because people with awareness might decide to make lifestyle adjustments, if they knew their spines had certain...weaknesses...about them...

i didn't realize that the doctors were so limited in their perspective...are they pediatricians, then? is that why?
i am NOT trying to be critical of the doctors...just asking why none seem to consider the futures...even immediate futures (20's)...of the kids they see...


jess

[Ballet Mom]

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.

Thank you skevimc for a nice rundown of the Scoliscore paper.

"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."

I have to be say, I'd be upset if my daughter was taken out of conservative treatment based on this test. Only 50-60% of the patients had a mild or moderate curve based on a scoliscore <41? Wow. Not accurate enough.

"The study groups the 10°-40° curves together so the number of patients with a low score but curve >30° isn't listed."

Why did they bunch these curve sizes all together? The breakout would obviously be more informative. This seems to be a key piece of missing information.

[Pooka1]

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.

Of course.

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.

Yes but how many kids would agree to a hard brace 23 hours a day if they knew they would be <40* at maturity? PT is a different game wherein it is probably ethical to suggest PT if the patient understands what the goal is.

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.

Well if that is true then ~15-25% of the patients had a score in the narrow range of 42-50. That is a range of only 9 points. I realize there is a large perhaps exponential or even power function decline in the number or patients as the score increases and so what follows has that caveat... this is only 9 points and is only 4.5% of the score range. So that would be up to a quarter of all the patients fell into less than 5% of the range? Is that correct? That doesn't seem likely but maybe. I have to get that paper.

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.

Right. That's why I limited my remarks to AIS girls with small curve where the negative prediction was 100%.

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.

Fair enough. And again, I think PT is a different game in terms of ethics than hard bracing in the light of Scoliscore.

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.

Yes. Some stuff online about the test seems to indicate some noise. I think they would have gone to <30* at maturity if they could have done so. The noise may have prevented it. Do they say how many patients ended up with a curve 30*<x<40* among the patients with a score <41?

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).

Yes I can see the point about PT. But the evidence case for hard bracing in the face of Scoliscore does trigger ethical questions.

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.

I think the utility will depend on how many kids who score <41 have a curve >30* at maturity. But even if it is a lot, until someone ponies up some more evidence for conservative treatments, the ethics question will be on the table w.r.t. hard bracing 23 hours/day at least.

Let me ask you something... by comparison to the case for bracing or PT holding curves below surgical range, how would you characterize the case for bracing or PT holding sub-surgical curves <30*? Is it stronger, weaker or about the same in your opinion. It appears non-existent to me but this isn't my field.

[hdugger]

i didn't realize that the doctors were so limited in their perspective...are they pediatricians, then? is that why?
i am NOT trying to be critical of the doctors...just asking why none seem to consider the futures...even immediate futures (20's)...of the kids they see...

Yes, it's the pediatric orthopedic surgeons who seem to be focussed so myopically on the end of *their* treatment of the patient, rather then on the patient themselves.

When my son was first diagnosed (at 35 degrees) the only thing we were told was that he was likely at the end of growth spurt (which turned out not to be so) and had a small enough curve that he wouldn't need to worry about it. But, he was already past the 30 degree "no likely problems/progression in the future" at that point.

What I *think* his doctor meant is the *he* (the doctor) wouldn't have to worry about it, not that my son wouldn't. That is, that my son wouldn't drift into the surgical range while he was still in that doctor's care. By the time he might need surgery, he'd be under an adult scoliosis doctor's care. I don't mean that his doctor didn't care - he was a decent enough guy - I just mean that his entire focus seemed to be on what his curve would be at 18, rather then on the whole course of the disease.

So, yes, I find the whole thing very, very odd. It's as if the problems magically disappear if only these kids can reach 18 with a curve under 50 degrees. Whereas, in many cases, that's just the start of the problems.

[Pooka1]

Yes, it's the pediatric orthopedic surgeons who seem to be focussed so myopically on the end of *their* treatment of the patient, rather then on the patient themselves.

Can they really be faulted for focusing on the only evidence they have in hand? It seems you are gigging them on short-changing patients without saying exactly how they are short-changing them. There is certainly no evidence the patients are being short-changed or you would see a tidal wave of malpractice lawsuits.

So, yes, I find the whole thing very, very odd.

In this game, when something seemed odd, it usually meant I was missing some key fact or facts. Surgeons do not go around routinely behaving "oddly" or in such a way to trigger malpractice suits. The gulf between surgeons and bunnies is huge... lots of territory in which a bunny might stumble and get lost. Maybe that is a good starting point to figure out why it seems odd.

Just a suggestion.

[hdugger]

Can they really be faulted for focusing on the only evidence they have in hand?

I'm not really certain how a pediatric surgeon could *not* know that curves above 30 degrees in adolescents can progress and/or become painful in adulthood.

Is that what you're saying? Or are you talking about something else?

[Pooka1]

I'm not really certain how a pediatric surgeon could *not* know that curves above 30 degrees in adolescents can progress and/or become painful in adulthood.

Is that what you're saying? Or are you talking about something else?

No that isn't what I'm saying. The authors of those articles saying <30* is protective are surgeons as far as I know.

But knowing that in no way enables them to offer a conservative treatment that will help.

What EXACTLY do you want from these surgeons. Please be specific. I have no clue whatsoever what you want from them at this point.

[hdugger]

I expect a doctor, any doctor, to give an actual prognosis of a disease, rather then offering a prognosis which expires at age 18.

Offering that prognosis has nothing whatsoever to do with whether or not they can treat the condition. A real prognosis, covering the expected lifetime of the patient, is really the very least one can expect from a doctor. If they're not planning on offering a real prognosis, then they should offer the kind of guarded prognosis that oncologists offer -"you have a 50% of not needing surgery or being in severe pain before you're 18."

Again, I have never encountered another disease which was treated in such an odd, discontinuous fashion, as if the child with the below 50 curve would never grow up to be an adult with an above-50 curve.

I'm not at all certain what offering that prognosis has to do with conservative treatments. It's just a prognosis.

[Pooka1]

Okay thanks.

I don't think they have the information that you want associated with any useful level of certainty. I don't think many things are known though some things are easier to study than others. For the latter, surgeons may never crack that nut before some treatment, conservative or non-fusion surgery or whatever, is developed.

I know you aren't suggesting they have information that they are not passing along for reasons other than not existing or due to extreme variability.

[hdugger]

I know you aren't suggesting they have information that they are not passing along for reasons other than not existing or due to extreme variability.

No, I'm suggesting exactly that. Pediatric orthopedic surgeons seem to be treating a specific disease which I'll call "progressing to surgery before age 18." Everything they do and everything they say is focussed solely on that disorder. The scolioscore is a perfect example of that myopia. What does it predict? Oh, it predicts whether or not someone will progress to surgery by 18.

Unless we've entered aggressively soylent green world where people are eaten when they reach their 18th birthday, I cannot figure out the point of that emphasis (or of the test at all). Really, what the hell do I care whether my kid requires surgery at 25 vs. 18. Or at 40 vs. 18. Or whether he never needs surgery, but is sidelined by pain. He's still my kid, no matter how big he gets.

If the real burden of the disease (pain or surgery in adulthood) is 30 degrees at maturity, then anything that can't predict who will exceed that cutoff is of no use whatsoever.