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View Full Version : The ethics of bracing (and PT) with a Scoliscore <41



Pooka1
01-04-2011, 05:26 AM
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.

I wonder if that is actually the standard of care now or is quickly heading towards becoming the standard of care. Linda, have you heard any noises about the ethics of bracing a child with a Scoliscore of <41? It may be viewed as outright unethical by surgeons. I could easily see that given the difficulty of brace treatment and the questionable efficacy to date.

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.

jrnyc
01-04-2011, 06:37 AM
what is the "formula" for being pretty sure one's child won't progress?
is it curves under 30 degrees at skeletal maturity?

and since there are always...always...those people who don't follow "the book"...or what the statistics say will probably happen...what does a parent trust?

it is so hard to look backward, as hindsight is 20/20...to say "we shoulda," or we "coulda"....

i don't know that i think bracing does anything but delay...but i don't blame a single parent for wanting some "insurance"...i know you don't either...
as a special ed teacher, years ago i went to Newington Childrens' Hospital in CT to look into what was done for kids with scoli...this was back in the 1970's...the guy there told me that if my curve had been found when i was younger, they would have recommended bracing me as a kid (that would have been Newington Childrens recommendation, anyway)
course, i'm pretty darn sure i woudn't have worn a brace, knowing how i was back then...but that's just me...

so i wonder how much has changed since back then...


jess

Pooka1
01-04-2011, 06:59 AM
what is the "formula" for being pretty sure one's child won't progress?
is it curves under 30 degrees at skeletal maturity?

A Scoliscore of <41 was associated with a zero risk of progressing to surgery range. So it isn't even "pretty sure," it is "will not reach surgery range" if the score is <41. Those are the results to date and we will have to see if they hold.

Beyond that, 30* at maturity seems to be viewed as protective against progression to surgery range in one's lieftime but there is stilll some small risk per what I understand. Moreoever there are people on this forum who progressed to surgery range starting from low 30*s at maturity. At least one surgeon called this event not unusual or not unheard of or something alnog those lines. That person may simply have had the progression delayed by the bracing as you mention below.


and since there are always...always...those people who don't follow "the book"...or what the statistics say will probably happen...what does a parent trust?

They should trust their surgeon to interpret the reserarch for them. If the Scoliscore results hold, the risk of progression to surgery range with a score of <41 is zero.


it is so hard to look backward, as hindsight is 20/20...to say "we shoulda," or we "coulda"....

i don't know that i think bracing does anything but delay...but i don't blame a single parent for wanting some "insurance"...i know you don't either...

I understand a parent wanting insurance but that isn't what is on the table with Scoliscore. A large majority of AIS cases with small curves will not progress to surgery range and they can identify who these children are. The news is not that a large percentage won't reach surgery range as that was known before. The groundbreaking aspect is they know who won't progress. This is individual-based medicine. If it holds then Ward/Ogilvie might rightly be considered for the Nobel for saving all these kids from bracing.

So rather than being a type of insurance, bracing might actually be unethical for kids with a Scoliscore of <41. And that is most kids with small curves.


as a special ed teacher, years ago i went to Newington Childrens' Hospital in CT to look into what was done for kids with scoli...this was back in the 1970's...the guy there told me that if my curve had been found when i was younger, they would have recommended bracing me as a kid (that would have been Newington Childrens recommendation, anyway)
course, i'm pretty darn sure i woudn't have worn a brace, knowing how i was back then...but that's just me...

so i wonder how much has changed since back then...

jess

Well, the knowledge that most kids with small curves will never reach surgery range was not changed. On the contrary, it has been completely validated by Scoliscore.

If you were recommended a brace and didn't wear it, you have ground to stand on in that it would not have made a difference in your outcome, especially if you have a high Scoliscore.

jrnyc
01-04-2011, 07:38 AM
thanks for the info, Sharon...much appreciated

but... it is that word "most" that bothers me...

just from my own experience, i am fairly sure my curve was under 40 degrees at skeletal maturity...but it did progress...i am not sure why it didn't bother me (pain) before age 31, but i vaguely remember a doctor i saw only once mention scoli to me when i had a physical for college, around age 16- 17...

jess

Pooka1
01-04-2011, 09:14 AM
thanks for the info, Sharon...much appreciated

but... it is that word "most" that bothers me...

just from my own experience, i am fairly sure my curve was under 40 degrees at skeletal maturity...but it did progress...i am not sure why it didn't bother me (pain) before age 31, but i vaguely remember a doctor i saw only once mention scoli to me when i had a physical for college, around age 16- 17...

jess

Oh I think I see what you are saying.

I don't think it is claimed that curves <40* at maturity won't progress. I think it is claimed that "most" curves <30* at maturity don't progress to surgical range.

Also, I don't think Scoliscore is claiming that all curves that are subsurgical at maturity like yours have a score of <41. I think it is clear that some curves between 30* and 40* at maturity must have a scoliscore >41 because they can and do progress to surgical range. A curve of <40* is not thought to be protective against progression. Only the curves <30* in that group are thought to be so.

I am using "most" not to just indicate that some large unidentified fraction of kids won't progress.

I am using "most" because Scoliscore indicates not only that most kids with small curves won't progress (something already known) but can determine EXACTLY WHICH KIDS will progress. It is on an individual basis. It isn't arm-waving. The "most" comment is just a summary statement of the KNOWN INDIVIDUAL results, not a general comment without knowing what individual cases will do.

For an individual kid, per these results, if the Scoliscore is <41, that child's curve WILL NOT PROGRESS past 40* per shte results in hand. That is why Lonner immediately pulled that girl out of hte brace when the score came back <41. He is resting that decision of the results to date for Scoliscore's accuracy at predicting curves that will not reach 40*.

The days of arm-waving and use of averages are waning for the conservative treatment game.

Pooka1
01-04-2011, 10:28 AM
For the elbenty-millionth time, this isn't my field.

And I claim that is obvious from my posts. Just ask hdugger.

Posting a claim that I or someone like me is associated with BrAIST is a reflection of your inability to follow along and to master the fact case here.

hdugger
01-04-2011, 10:34 AM
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.

Pooka1
01-04-2011, 10:40 AM
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.

Having all the concern in the world for those other concerns doesn't move the needle ONE IOTA towards there actually being an effective conservative treatment approach.

That's why conversations that go like this are less than useful.

Everyone is concerned with all those things. Only some subset of folks realize there is no proven conservative treatment that can change the course of a kid irrespective of their Scoliscore. That's why it is important to talk about the ethics of bracing now that Scoliscore is on the scene.

Pooka1
01-04-2011, 10:43 AM
By the way hdugger, are your saying it was unethical for Lonner to take that girl out of brace with a Scoliscore of <41?

Just curious based on your remarks above. I am almost guessing you would say yes.

hdugger
01-04-2011, 10:48 AM
By the way hdugger, are your saying it was unethical for Lonner to take that girl out of brace with a Scoliscore of <41?

Just curious based on your remarks above. I am almost guessing you would say yes.

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.

Pooka1
01-04-2011, 10:56 AM
Roger that.

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

Pooka1
01-04-2011, 10:59 AM
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.

Thanks.

Ballet Mom
01-04-2011, 11:06 AM
For the elbenty-millionth time, this isn't my field.


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.

The difference between my daughter's deformity at 35 degrees and at 30 degrees is profound. I resent ANYONE assuming that these kids and parents are going to be happy when they are diagnosed with a small, unnoticeable curve and end up with a pronounced deformity that is subsurgical, due to a test that is basically the cost of a brace. You saw this yourself with your daughter when she stopped bracing because she didn't like the look of her back when it reached the upper thirties.

A curve over 35 degrees, especially for lumbar curves, increases the odds of an increasing curve, increased deformity and pain and surgery as an adult. I'm sure everyone will be thrilled to submit to the new genetic paradigm.

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

"A Scoliscore of <41 was associated with a zero risk of progressing to surgery range. So it isn't even "pretty sure," it is "will not reach surgery range" if the score is <41. Those are the results to date and we will have to see if they hold."

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? Why do you ignore the following DESIGN of the test:

"Using the test, about 75 percent of the patients were accurately identified as low risk, with a 1 percent chance of progressing to a surgical curve."

99% is not 100%, but this is just quibbling, because I can't imagine anyone is going to be happy with having a 30-40 degree curve due to the test when it could have been much smaller, and no doubt won't get surgery unless it's at 50 degrees since their growth will be complete. So that leaves curves of 30-50 degrees to just deal with it. I'm afraid your promotion, once this is completely explained to patients and their parents, will fail.

Pooka1
01-04-2011, 11:16 AM
How do you happen to have all this inside information, that any lay person wouldn't possibly have?

I never realized the published abstract was "inside information." You read it yourself so your have inside information also.


"Using the test, about 75 percent of the patients were accurately identified as low risk, with a 1 percent chance of progressing to a surgical curve."

That's taking the <50 cutoff.

I have continually been writing <41 because that was associated with 100%. And you knew this because we have been through it.

If you would quell your emotions and start using intellect then you would not be posting things like this.

Do you think Lonner was unethical in taking that girl with a Scoliscore of <41 out of brace? Yes/No?

Pooka1
01-04-2011, 11:22 AM
Forgot to mention... the <41 crowd is "about 75%" per the abstract as far as I can tell. So my statement as written reflects the material in the abstract.

Pooka1
01-04-2011, 11:24 AM
http://journals.lww.com/spinejournal/Abstract/2010/12010/Validation_of_DNA_Based_Prognostic_Testing_to.18.a spx

Ballet Mom
01-04-2011, 11:38 AM
That's taking the <50 cutoff.

I have continually been writing <41 because that was associated with 100%. And you knew this because we have been through it.

Do you think Lonner was unethical in taking that girl with a Scoliscore of <41 out of brace? Yes/No?

If you take a <50 cutoff, then it doesn't include 75% of patients.

Is our medical system supposed to pay for a test, which is basically the cost of a brace, for every single person diagnosed with non-adult scoliosis each year, so that kids can be left to increase to 40 degrees? 100,000 people a year are diagnosed with scoliosis each year, limited slightly by Axial Biotech's restrictions. 30,000 patients are braced.

I think any medical professional who is not explaining the whole story of the Scoliscore test is being unethical. Meaning, if they did not explain that Scoliscore is not showing who won't progress at all, but who may progress to a significant, subsurgical curve with unsatisfactory deformity.

hdugger
01-04-2011, 11:47 AM
Roger that.

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

It takes *great* medical literature to provide a clear enough course of action that even novices such as ourselves can follow it.

When the research is lacking, doctors rely more heavily on their experience and training, and novices can no longer follow along.

Which is to say, *I* would not have surgeons do anything, given the literature. I would ask them what they would do.

hdugger
01-04-2011, 11:48 AM
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.

If surgeons are relying on me to do their job, we are all in very, very deep trouble.

Pooka1
01-04-2011, 12:00 PM
If you take a <50 cutoff, then it doesn't include 75% of patients.

It is still "about 75%." The percentage who won't reach 40* drops from 100% to >99% going from a score of 41 to 50 if I understadn that abstract. This was stated in our PREVIOUS DISCUSSION and you did not take issue with it. Is there anyone else who uses your screen name???


I think any medical professional who is not explaining the whole story of the Scoliscore test is being unethical. Meaning, if they did not explain that Scoliscore is not showing who won't progress at all, but who may progress to a significant, subsurgical curve with unsatisfactory deformity.

There are likely ZERO surgeons who aren't explaining the whole story. Whay wouldn't they explain the whole story? There is not a single rational reason not to be honest.

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.

Pooka1
01-04-2011, 12:02 PM
It takes *great* medical literature to provide a clear enough course of action that even novices such as ourselves can follow it.

When the research is lacking, doctors rely more heavily on their experience and training, and novices can no longer follow along.

Which is to say, *I* would not have surgeons do anything, given the literature. I would ask them what they would do.

Okay so if Lonner or anyone of that type pulled your (imaginary) daughter out of a brace, that would be fine with you. It would be fine with me too for my real daughetrs.

Pooka1
01-04-2011, 12:03 PM
If surgeons are relying on me to do their job, we are all in very, very deep trouble.

Agreed. That's why they don't rely on bunnies like us to make professional decisions.

hdugger
01-04-2011, 12:08 PM
Okay so if Lonner or anyone of that type pulled your (imaginary) daughter out of a brace, that would be fine with you. It would be fine with me too for my real daughetrs.

It would depend entirely on the conversation I had with my imaginary surgeon and my imaginary daughter. Without having that conversation with my surgeon, I could not begin to imagine what my response might be.

Likewise any other conversation I might have with my surgeon about any topic, including surgery. It's *all* based on the exact details of my case and what information I get from my surgeon, and it's not at all based on what I might or might not read in these forums.

hdugger
01-04-2011, 12:10 PM
Agreed. That's why they don't rely on bunnies like us to make professional decisions.

So, why exactly are we discussing the ethics of continuing or discontinuing a particular treatment, given that we all understand that we don't know enough to make such a decision?

jrnyc
01-04-2011, 12:16 PM
OK...so i get it now...
(just got back from running errands with Spark)

the score stuff is for progression during teen years, perhaps to age 21 or so...

are all bets off after that, as in my case, when it started to bother me at age 30-31???
because then, i guess it makes sense to me...

i thought they were saying that if you made it to age 18 without a larger curve, you were safe for life...which just ain't so!

just looking back, i think my lifestyle set me up for an increase in curve(s), and without a serious warning about what could come, i was blissfully unaware of just what my spine was going to bring me...
of course, i was so traumatized by doctors so very young, i doubt i would have listened anyway...

but thanks for making it so clear to me!
jess

Ballet Mom
01-04-2011, 12:29 PM
It is still "about 75%." The percentage who won't reach 40* drops from 100% to >99% going from a score of 41 to 50 if I understadn that abstract. This was stated in our PREVIOUS DISCUSSION and you did not take issue with it. Is there anyone else who uses your screen name???



There are likely ZERO surgeons who aren't explaining the whole story. Whay wouldn't they explain the whole story? There is not a single rational reason not to be honest.

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.

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 didn't say anyone isn't being honest. If parents are making a decision to abandon bracing knowing that their kid may end up with a significant deformity still, it's not my business. I expect parents to be able to make that decision with all relevant information being told to them. I do notice that lots of Scoliscore material talks about no progression, when in actuality, it is no progression past a large deformity threshold.

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. It is up to the patient and their parents to make that decision to brace or not. My daughter is an example of a wonderful outcome of conservative methods in a patient that really can't be chalked up to being a low Scoliscore.

hdugger
01-04-2011, 12:35 PM
Yes, I think that's exactly right, Jess. If your curve was just under 40 when you hit maturity, then you likely would have been in the low scolioscore group and not received treatment/follow-up.

Would that have been the right decision? I don't really know. But I am troubled by the tunnel vision focus on the curve angle at the end of adolescence, rather then a focus on the lifetime course of the disease.

Pooka1
01-04-2011, 02:18 PM
Yes, I think that's exactly right, Jess. If your curve was just under 40 when you hit maturity, then you likely would have been in the low scolioscore group and not received treatment/follow-up.

What if she was somewhat about 40* or slightly above at maturity?

Also, even assuming she was <40* at maturity, I am not so sure there are no patients who have intermediate scores who are <40* at maturity. And I am definitely not sure of the rate of those with low or intermediate scores who go on to progress to surgery range if they are >30*. That number is finite but I think Scoliscore is silent on that point. I don't think what you are saying follows necessarily from any of the Scoliscore material that I can tell but I am probably missing something. Can you elaborate?

hdugger
01-04-2011, 02:31 PM
I'm saying the scolioscore's predictive value ends at the end of childhood. If having a particular sized curve at the end of childhood is *all* that you care about, then by all means, focus only on the scoliscore.

OTOH, if you're interested in anything other then whether your child will need fusion surgery by age 18 - like, for example, how they'll feel about their body for their entire life, or whether they'll have a painful curve by age 30, or whether they'll need surgery by age 50 - then you might want to take a broader look.

Pooka1
01-04-2011, 02:40 PM
I'm saying the scolioscore's predictive value ends at the end of childhood. If having a particular sized curve at the end of childhood is *all* that you care about, then by all means, focus only on the scoliscore.

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.

Also, I think there is a rampant assumption that ALL these kids will end up slightly under 40* at maturity or between 30* and 40*. Just because <40* is the cut-off doesn't mean that most kids are up against it. Maybe most kids with a Scoliscore of <41 in fact end up with a curve <30*. Who knows but that is my guess.


OTOH, if you're interested in anything other then whether your child will need fusion surgery by age 18 - like, for example, how they'll feel about their body for their entire life, or whether they'll have a painful curve by age 30, or whether they'll need surgery by age 50 - then you might want to take a broader look.

How will taking a broader look help in the least? 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?

mariaf
01-04-2011, 02:49 PM
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
01-04-2011, 02:53 PM
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
01-04-2011, 02:55 PM
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
01-04-2011, 02:56 PM
I rest my case.

Ballet Mom
01-04-2011, 02:57 PM
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
01-04-2011, 02:58 PM
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
01-04-2011, 02:59 PM
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
01-04-2011, 03:00 PM
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
01-04-2011, 03:02 PM
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
01-04-2011, 03:03 PM
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
01-04-2011, 03:05 PM
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
01-04-2011, 03:07 PM
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
01-04-2011, 03:11 PM
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
01-04-2011, 03:12 PM
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
01-04-2011, 03:15 PM
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.

Pooka1
01-04-2011, 03:19 PM
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
01-04-2011, 03:30 PM
Please don't lump Maria and I in there. There is no cause to do that.

.... lol ....

Sorry hdugger.

hdugger
01-04-2011, 03:38 PM
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
01-04-2011, 03:48 PM
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
01-04-2011, 03:53 PM
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
01-04-2011, 04:00 PM
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
01-04-2011, 04:02 PM
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
01-04-2011, 07:02 PM
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
01-04-2011, 07:08 PM
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
01-04-2011, 07:18 PM
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
01-04-2011, 07:23 PM
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
01-04-2011, 07:27 PM
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
01-04-2011, 07:49 PM
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
01-04-2011, 08:00 PM
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
01-04-2011, 08:17 PM
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.

LindaRacine
01-04-2011, 09:49 PM
I agree. I think the issue is that surgeons who treat mostly kids, usually don't see their patients after they hit adulthood, thus they end up with a rather slanted view of outcomes.

jrnyc
01-05-2011, 02:18 AM
i think it is a really important point..

life doesn't END at age 18, it is just beginning, in many ways!

why wouldn't pediatricians pass their patients on to "adult" type doctors?
in other words, tell the parents to have their child, soon to be an adult, followed closely as an adult, with an orthopedic surgeon or orthopedic doctor who specializes in scoli...?!!

i am listening for that in these posts, but not hearing it...?!

sounds...a little...short sighted...almost irresponsible...to me!
kinda like tunnel vision..."well, he/she's not my patient anymore...i'm off the hook as the doctor"

no?

jess

Pooka1
01-05-2011, 05:41 AM
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.

Okay you appear to be disagreeing that pediatric orthopedics should be a field. Linda and I have briefly discussed this general topic of talking kids to a pediatric guy versus a guy who does everyone. I see Linda chimed in. I think there are pros and cons. There are plenty of folks here who brought their kids to adult orthopedic surgeons.

But I'm sorry to keep bringing you back to the bottom line but unless you are saying that the guys who treat kids and adults have effective conservative treatments than the pediatric guys don't have then I don't see how it could possibly matter.

Thought question not necessarily related to the rest of this post: If your son was told to wear a Milwaukee brace with a neck collar for 23 hours a day for his high T curve for 3-4 years, would he have done so? Would you have been asking him to do so?

I just think this aspect of blood from a stone is always "in the air" in threads like this and is not fully acknowledged.

Pooka1
01-05-2011, 06:03 AM
So just to be clear, I hear you complaining that were weren't told X, Y, and Z by the orthopedic guys you saw early on and you are generalizing that to the entire population of pediatric orthopedic surgeons.

I'm going to grant all that is true for the moment.

What you still haven't come even close to establishing is whether or not it matters what you were told versus what there is out there in the way of conservative treatments.

Are you saying that adult surgeons had something more to offer your son when he was younger and that you missed the boat?

While I might agree that the pediatric guys and the adult guys might (might!) have different perspectives, I think the range of opinions within each group is likely larger than the differences between the two groups.

Is there any evidence whatsoever that anyone missed any boat in going to a pediatric guy versus an adult guy or vice-versa in terms of outcome? What is it?

hdugger
01-05-2011, 09:24 AM
Thought question not necessarily related to the rest of this post: If your son was told to wear a Milwaukee brace with a neck collar for 23 hours a day for his high T curve for 3-4 years, would he have done so? Would you have been asking him to do so?

We actually asked for a brace, by the second visit. Whether or not my son would have worn it, I don't know.

Our doctors' response (non-scoliosis specialist) was all about the discomfort of the brace and not at all about its effectiveness. Because my son was almost 18 at that point with a 47 degree curve, we didn't press. We realized that that ship had already sailed.

As for conservative treatment, I'm not certain that we know very much about keeping curves under 30 degrees. The research interest appears to be in the surgical trigger. But, if the trigger is actually much lower, then McIntire and people like him have a huge opportunity to try and nail down how to keep small curves small.

I also wonder what the point is in emphasizing conservative treatment between 30 and 50 degrees. If the battle is lost at 30, then maybe *less* energy should spent after 30 degrees is reached. But, I'm only about 30 minutes into that thought - I might well change my mind.

The scolioscore, of course, is just going to make all of this much harder, since it puts the emphasis on *not* treating unless the 50 degree trigger is likely to be reached, instead of focussing on keeping the under 30 crowd under 30.

hdugger
01-05-2011, 09:27 AM
why wouldn't pediatricians pass their patients on to "adult" type doctors?
in other words, tell the parents to have their child, soon to be an adult, followed closely as an adult, with an orthopedic surgeon or orthopedic doctor who specializes in scoli...?!!

It's possible that's happening with the SRS pediatric orthos when the have kids who are in the high 40s, but I don't think it happens nearly enough with kids in the 30s. I don't think most parents realize that 30 is an important milestone - they're all focussed on staying under 50.

I realize we're having a very thoracic-centered discussion. The 30 vs. 50 cutoff is all about thoracic curves. With lumbar curves, the numbers are lower. Once you reach 30, you're likely to progress, so probably those curves have to stay below 20 in order to be stable through adulthood.

leahdragonfly
01-05-2011, 10:09 AM
[QUOTE=hdugger;114558]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. <snip>

I wanted to add my personal opinion of the above comment. Whatever one believes about bracing, all/most orthopedic surgeons agree that bracing after skeletal maturity is achieved will have no effect at all. So, I think the only thing they have to offer is bracing before skeletal maturity, where the vast majority of progression occurs. This is progression that is related to growth. Once growth is complete, I believe many of the cases that progress in middle age (such as mine) are related to degeneration, which is distinctly different than progression related to growth. Degeneration is more of a mechanical wearing out of the spine due probably to uneven loading. I am guessing that about the only thing that may help with pain from degeneration is PT and exercise (things like swimming, pilates etc that exercise the whole body).

The only non-surgical treatment right now that the pediatric orthopedists can offer for progression related to growth is bracing (until the curve becomes surgical). So, that is what they have to offer and therefore that is what they focus on.

I was braced as a young teen for a double curve, lumbar and thoracic 32 and 33 degrees. If I hadn't been braced it seems very possible that I would have ended up with a harrington rod then (this was in 1980). I HATED my brace, and yes I just underwent a huge fusion surgery (at age 43), BUT I am glad I didn't have a harrington rod for the last 30 years. So in my mind it may not have been possible to avoid surgery over my lifetime, but to postpone surgery for 30 years, I'd say that's better than the alternative. Just my personal opinion. Of course we all want the crystal ball for our children...

Gayle

Pooka1
01-05-2011, 10:41 AM
I also wonder what the point is in emphasizing conservative treatment between 30 and 50 degrees. If the battle is lost at 30, then maybe *less* energy should spent after 30 degrees is reached. But, I'm only about 30 minutes into that thought - I might well change my mind.

I think it is inexact to say the battle is lost once the 30* threshhold is reached. There is likely some percentage, who knows how high, of folks over 30* who never need fusion for either pain or progression. I am guessing it is fairly high because of the focus on 50* or so as the upper limit for conservative treatment.

It would be grand to know the lifetime outcome in terms of progression and pain for people at 30* vice 35* vice 40* vice 45*.

Maybe there is some pub or combination of pubs that can be used to estimate this.

It would also be just ducky to see the Scoliscore data of the number of patients at each score and what their curves were at maturity. It could be most of the patients with a score of <41 were also <30* at maturity. And I am not implying there is necessarily a tight correlation between the range of low scores and the curve at maturity. I am just asking about the group as a whole.

It could be the case that relatively few people actually have a curve> 30* at maturity. Our impression is likely totally skewed by the attention the curves 30*<x<50* receive as we go around and around about the evidence cases for various conservative treatments. What I'm saying is that Scoliscore might be totally consistent with what is already known, to wit, most kids need no treatment becsause their curves are too small and will stay that way as a consequence of natural history.

Now that doesn't help with the question of efficacy of conservative treatments for kids in the treatment window. But any time Scoliscore independently corroborates a previously held claim, it strengthens both.

hdugger
01-05-2011, 11:06 AM
I was braced as a young teen for a double curve, lumbar and thoracic 32 and 33 degrees. If I hadn't been braced it seems very possible that I would have ended up with a harrington rod then (this was in 1980). I HATED my brace, and yes I just underwent a huge fusion surgery (at age 43), BUT I am glad I didn't have a harrington rod for the last 30 years. So in my mind it may not have been possible to avoid surgery over my lifetime, but to postpone surgery for 30 years, I'd say that's better than the alternative. Just my personal opinion. Of course we all want the crystal ball for our children...


I think postponing surgery for 30 years is a success story - we're likewise trying to keep our kid off the operating table for as long as he can stay off of it.

My complaint with pediatric surgeons is that that outcome (delaying surgery) isn't one of the stated endpoints. The endpoints, as far as I know, are all about having surgery or not by age 18, and then everything fades to black. I'd like to see a broader conversation take place, which includes both the 30 degree cutoff and a clearer picture of what life with scoliosis is like.

For example, if you have a child with a 40 degree curve in a brace with some growth remaining, the conversation is not how to keep them out of surgery, but whether to delay it or not by continuing to brace them. As far as I know, *that* conversation never happens with pediatric surgeons. I'm still puzzled as to why not.

hdugger
01-05-2011, 11:11 AM
I think it is inexact to say the battle is lost once the 30* threshhold is reached. There is likely some percentage, who knows how high, of folks over 30* who never need fusion for either pain or progression. I am guessing it is fairly high because of the focus on 50* or so as the upper limit for conservative treatment.

I would broaden that to pain *or* fusion. There's lots of people out there who have pain but will never have surgery. For my son, and I suspect for all of our kids, what we're trying to do is give them the best life they can have, and not just keep them off the operating table. If he's in pain and has limited mobility but doesn't have surgery, that's not really a success story.

yes to all the rest. We really need to get the focus off 50 degrees by 18 and look at the full range of curves over a lifetime. Without that information, we're just steering in the dark.

mamandcrm
01-05-2011, 12:08 PM
Is there a link to the final published Scoliscore study somewhere on the forum or is it pay/subscription only?

hdugger
01-05-2011, 12:44 PM
I don't have that, but there's a ton of information in this paper - http://66.132.176.228/portals/12/resources/ScoliScoreTechMono_12.pdf - on their site.

mamandcrm
01-05-2011, 01:22 PM
Thanks, I'll look at that. I found the pubmed abstract but it's very brief.

On a different note, the bracing question aside, I personally find a lot of value in the scoliscore simply from the perspective of minimizing radiation children will receive. If a 9 year old gets a low score, whether or not that child ends up in a brace, I would think that the number of x-rays over his/her childhood could be reduced significantly. Other than checking for brace correction, the main purpose of the x-rays is to see if the child is progressing into surgical territory, isn't it?

It also was interesting to read the newspaper articles talking about the study. Almost all interview and quote treating doctors. The doctors pretty much all refer to the test as nice addition to the toolbox but not something they would rely on exclusively. One was quoted as saying that he would brace and wouldn't bother giving the test to a child who comes in with a 35* curve because he "already knows she's progressive". 35* is well below surgical so that seems to indicate some (initial, at least) distrust of the test. I'm sure most don't want to be the doctor who recommended no bracing based on the scoliscore, and then the child ends up in surgery. I know, I know, the makers say the test is 100% predictive, but what if, you know, they're wrong?

And why does this not work for juveniles, or did they just not look at that at all (so what else is new)?

hdugger
01-05-2011, 01:30 PM
I don't think they looked at juveniles (or adults). I'm guessing they did some preliminary work and found too much noise in the juvenile population, but that's a total guess.

The test also doesn't work once a curve is over (I think) 30 degrees, so it wouldn't be given to someone with a 35 degree curve. And it's not recommended, even in the literature, to use as the sole diagnostic criteria.

Yes, on the xrays. I'd like to see a lot fewer xrays and a lot more PT in the small curve crowd. Maybe (and I say this while not believing at all that it will happen) those children with a low scolioscore who are under 30 degrees ought to be released from doctor care and sent to PT instead.

mamandcrm
01-05-2011, 01:37 PM
I read in one place that the test criteria had been expanded to any child (with AIS and an immature spine) with a curve under 40*. It was from August I think. But perhaps that was not correct, or was later changed. It would seem to make sense though. If the point is that the low-scoring child will stay sub-surgical while their spine is growing, then I don't understand why would it matter at what degree point they get the test.

mamandcrm
01-05-2011, 02:01 PM
It seemed to me that the initial focus of the thread was just that, should it be the sole diagnostic criteria for kids with low scores and no other risk factors--meaning straight- up AIS. Low score = no brace. I personally don't think it's that simple but I thought that was the initial suggestion posed. I would not think the manufacturer would suggest in their literature that it should be the sole diagnostic tool as that would just open them up to lawsuits.

hdugger
01-05-2011, 02:13 PM
I guess I had glossed over the fact that this was a retrospective study.

Given that, I can't see how they could have controlled for the effects of bracing. Either:

1) They picked children, even children with large curves, who had never been braced (which would have to be a less than random sampling of the available curves)

or

2) They included children who had been braced (which would be assumed to change their final curve.)

Is there some third choice I'm not seeing?

hdugger
01-05-2011, 02:16 PM
It seemed to me that the initial focus of the thread was just that, should it be the sole diagnostic criteria for kids with low scores and no other risk factors--meaning straight- up AIS. Low score = no brace. I personally don't think it's that simple but I thought that was the initial suggestion posed. I would not think the manufacturer would suggest in their literature that it should be the sole diagnostic tool as that would just open them up to lawsuits.

Right, the manufacturer is not suggesting that. The idea that children with low scores should be unbraced based solely on their score has only been presented by Pooka, and not by test manufacturer.

hdugger
01-05-2011, 02:26 PM
Actually, I just looked at the Lonner video, and he doesn't say that he took a child out of the brace based on the scolioscore. He says that he looked at a whole set of factors, and based on all of those factors, he made the decision.

Pooka1
01-05-2011, 02:36 PM
Actually, I just looked at the Lonner video, and he doesn't say that he took a child out of the brace based on the scolioscore. He says that he looked at a whole set of factors, and based on all of those factors, he made the decision.

Did he say what the factors were? (Maybe I should just view the video again...)

Pooka1
01-05-2011, 02:48 PM
Okay I watched the video. That girl has multiple family members on BOTH sides of the family affected by scoliosis and Lonner took her out of the brace.

My question then becomes who does he leave in a brace with a score of 16 if not her? I wonder if it is anyone at all.

He did say he relied on other factors but I would like to know what they are in this case. Either Scoliscore has a 100% prediction rate for AIS girls with small curves in the calibration set or it doesn't.

hdugger
01-05-2011, 02:51 PM
I can't answer any of those questions. All I know is that the person who developed the test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.

Pooka1
01-05-2011, 02:51 PM
Actually, I just looked at the Lonner video, and he doesn't say that he took a child out of the brace based on the scolioscore. He says that he looked at a whole set of factors, and based on all of those factors, he made the decision.

He did say that but he also made a remark that Scoliscore had the ability to be a game-changer (he didn't use that word but it was an equivalent word that I can't recall).

If scoliscore wasn't the reason he took that girl out of brace then the actual reason is not obvious from that video despite what he said.

hdugger
01-05-2011, 03:12 PM
I'm guessing their hedging their bets until the *real* results of the scolioscore test - how it predicts curves going forward - are in. (See my notes above about bracing for one of many reasons why these results can't possibly be 100% solid for any score.)

That's supported by another quote I saw from him saying a child with a low score could have xrays "every 8 to 12 months instead of every 3 to 6 months."

I wonder if it's made clear to parents that their low scoring child's curve could increase 20 degrees (given that they came in with a 20 degree curve) and still be considered a complete success.

skevimc
01-05-2011, 03:14 PM
I guess I had glossed over the fact that this was a retrospective study.

Given that, I can't see how they could have controlled for the effects of bracing. Either:

1) They picked children, even children with large curves, who had never been braced (which would have to be a less than random sampling of the available curves)

or

2) They included children who had been braced (which would be assumed to change their final curve.)

Is there some third choice I'm not seeing?

The genetic markers they are looking at/for are stable and thus bracing or any other type of treatment would not change over time.

skevimc
01-05-2011, 03:23 PM
He did say he relied on other factors but I would like to know what they are in this case. Either Scoliscore has a 100% prediction rate for AIS girls with small curves in the calibration set or it doesn't.

It doesn't. Assuming I understand what you're asking or saying. The three cohorts they used to test/validate the AIS-PT were selected in order to model the standard populations. 1. those referred to the doctor by in-school screening. 2. those who are seen in an active spine surgery clinic. 3. Same as #2 but with males instead of females.

In the validation tests, group 1 had 0 severe curves with an AIS-PT <41. Groups 2 and 3 had a total of 5 with a severe curve and an AIS-PT <41.

You are wondering if the scoliscore has a 100% accuracy/prediction rate for small curves, but that's not what the study was about.

Pooka1
01-05-2011, 03:24 PM
I'm guessing their hedging their bets until the *real* results of the scolioscore test - how it predicts curves going forward - are in. (See my notes above about bracing for one of many reasons why these results can't possibly be 100% solid for any score.)

Actually, in the BIOCHEMISTRY game, results CAN be 100%. This is molecules we are discussing.


That's supported by another quote I saw from him saying a child with a low score could have xrays "every 8 to 12 months instead of every 3 to 6 months."

Yes. I suspect all such comment are CYA - Cover Your Bases - when dealing with the group with 100% negative prediction in the calibration set. But all results are provisional still and they nee dot constantly accumulate data.


I wonder if it's made clear to parents that their low scoring child's curve could increase 20 degrees (given that they came in with a 20 degree curve) and still be considered a complete success.

I would be shocked if the test wasn't completely explained to them. Surgeons aren't trying to hide anything. They have no reason to do so and every reason not to do so.

Pooka1
01-05-2011, 03:25 PM
It doesn't. Assuming I understand what you're asking or saying. The three cohorts they used to test/validate the AIS-PT were selected in order to model the standard populations. 1. those referred to the doctor by in-school screening. 2. those who are seen in an active spine surgery clinic. 3. Same as #2 but with males instead of females.

In the validation tests, group 1 had 0 severe curves with an AIS-PT <41. Groups 2 and 3 had a total of 5 with a severe curve and an AIS-PT <41.

You are wondering if the scoliscore has a 100% accuracy/prediction rate for small curves, but that's not what the study was about.

All I have at the moment is the abstract. Can you address what that says w.r.t. to what the article says?

hdugger
01-05-2011, 03:26 PM
The genetic markers they are looking at/for are stable and thus bracing or any other type of treatment would not change over time.

I didn't mean that the markers would change with bracing, but rather that a braced child with a 35 degree curve and an unbraced child with a 35 degree curve would end up in same low risk pool when studied retrospectively, but they might have a very unequal risk when studied prospectively with bracing controlled for.

That is, the braced 35 degree child, if unbraced, might have ended up with a 50 degree curve, and thus would not be included with the low-risk group.

Am I missing something here?

Pooka1
01-05-2011, 03:29 PM
I didn't mean that the markers would change with bracing, but rather that a braced child with a 35 degree curve and an unbraced child with a 35 degree curve would end up in same low risk pool when studied retrospectively, but they might have a very unequal risk when studied prospectively with bracing controlled for.

That is, the braced 35 degree child, if unbraced, might have ended up with a 50 degree curve, and thus would not be included with the low-risk group.

Am I missing something here?

I think we all have to read the paper. If Dr. McIntire is right, I have misunderstood the abstract. Completely.

(off to re-check that English is my first language...)

hdugger
01-05-2011, 03:29 PM
Actually, in the BIOCHEMISTRY game, results CAN be 100%. This is molecules we are discussing.

I mean that, if they didn't somehow control for bracing when developing the test, then the biochemical results they ended up with aren't solid.

Pooka1
01-05-2011, 03:31 PM
I mean that, if they didn't somehow control for bracing when developing the test, then the biochemical results they ended up with aren't solid.

Yes if they didn't control for bracing in a retrospective study that I would say that was "sloppy." I am not sure anyone can claim the results are confounded though. They might be but nobody can KNOW that.

mamandcrm
01-05-2011, 03:41 PM
I also think that a lot of doctors (and parents) are going to get out of their comfort zone with this test when confronted with children with curves somewhere over 30* with growing left to do, who have a low score. That would just be human nature. So my point is, no matter how predictive the manufacturer says the test is (and I just assumed that none of the study participants had been braced, but perhaps that's not correct), how the scores will be used is still a very open question. It may not get the broad application that is being proposed here in this thread by the OP.

Pooka1
01-05-2011, 03:44 PM
It doesn't. Assuming I understand what you're asking or saying. The three cohorts they used to test/validate the AIS-PT were selected in order to model the standard populations. 1. those referred to the doctor by in-school screening. 2. those who are seen in an active spine surgery clinic. 3. Same as #2 but with males instead of females.

In the validation tests, group 1 had 0 severe curves with an AIS-PT <41. Groups 2 and 3 had a total of 5 with a severe curve and an AIS-PT <41.

You are wondering if the scoliscore has a 100% accuracy/prediction rate for small curves, but that's not what the study was about.

I think the claim is that of the cohort of AIS girls with small curves and a score <41, 100% ended up <40* at maturity. That is what I think the abstract said and what I have been saying. Is that incorrect?

I realize the two other groups were <100% (though they were still high).

hdugger
01-05-2011, 03:56 PM
The small risk group is children sent in from in-school screening. I'm not sure if their curve size was any different from the other groups, and I think there were both boys and girls in that group.

Ballet Mom
01-05-2011, 05:23 PM
I wonder if it's made clear to parents that their low scoring child's curve could increase 20 degrees (given that they came in with a 20 degree curve) and still be considered a complete success.

I suspect this is the issue that will eventually be duked out in court by unhappy parents/patients if they haven't been explained the full ramifications of the decision to be set free from bracing by use of the Scoliscore test.

skevimc
01-05-2011, 06:07 PM
I didn't mean that the markers would change with bracing, but rather that a braced child with a 35 degree curve and an unbraced child with a 35 degree curve would end up in same low risk pool when studied retrospectively, but they might have a very unequal risk when studied prospectively with bracing controlled for.

That is, the braced 35 degree child, if unbraced, might have ended up with a 50 degree curve, and thus would not be included with the low-risk group.

Am I missing something here?

The "low risk pool" isn't based on the curve size. It's based on the test score. But I think I understand what you're saying. The only thing they mention about bracing is:

At present, 178 of the 183 patients (97%) with AIS-PT scores >190 have progressed to a severe curve. Indeed, 175 of 178 of those patients (98%) have undergone fusion surgery. Of these 178 patients, 46.7% reported compliance with prescribed brace treatment.

They don't mention how many people with a score <190 were in a brace. What the test does the best is to say that people with a score of >190 have ~97% chance of progressing to a severe curve. The cut off of 190 was picked because the regression curve drops off a cliff and people in the 180's appear to have a risk anywhere from 40%-90%. 170's appear to be anywhere from 20%-45%. And anything below 150 has <20% chance of progressing to severe.


I think the claim is that of the cohort of AIS girls with small curves and a score <41, 100% ended up <40* at maturity. That is what I think the abstract said and what I have been saying. Is that incorrect?

I realize the two other groups were <100% (though they were still high).

The group to which you are referring is the "low risk group". This did not necessarily imply a small curve. This group was based on the population that generally gets referred to a doctor due to in-school screening. They then populated that group by selecting a specific percentage of patients for the mild-moderate-severe curves (85%, 12%, 3% respectively). It's kind of a weird way to pick the groups and I only partially understand why they did it. At any rate, of this group (n=277) there were 176 patients that had a score <41. Of these 176, 0 had a severe curve. Additionally, there were 101 patients with a score >40. 93 had a moderate-mild curve and 8 had a severe curve.

skevimc
01-05-2011, 06:12 PM
The small risk group is children sent in from in-school screening. I'm not sure if their curve size was any different from the other groups, and I think there were both boys and girls in that group.

No, there were only females in the "school screening" group. The curve sizes were different in each group, however all three groups had mild-moderate-severe curves represented. They were just in different percentages. This was done by design, i.e. they wanted the school screening group to have fewer severe curves in it and the higher risk group to have more.

Ballet Mom
01-05-2011, 06:25 PM
skevimc,

Could you let us know what are the Cobb angle of the curves that are classified as mild, moderate or severe in this study?

Thanks.

hdugger
01-05-2011, 06:40 PM
They don't mention how many people with a score <190 were in a brace. What the test does the best is to say that people with a score of >190 have ~97% chance of progressing to a severe curve. The cut off of 190 was picked because the regression curve drops off a cliff and people in the 180's appear to have a risk anywhere from 40%-90%. 170's appear to be anywhere from 20%-45%. And anything below 150 has <20% chance of progressing to severe.

Ah, that's very helpful (and the exact reverse of how I understood it). So, the best use of this test is in predicting the people who need the *most* treatment (those above 190), rather then in recommending less treatment for those with lower scores?

Ballet Mom
01-05-2011, 06:50 PM
A crystal ball for the spine
DNA test helps predict likely progression of scoliosis

By M.B. Sutherland, Special to the Tribune

January 5, 2011

http://www.latimes.com/health/ct-x-s-health-scoli-score-0105-20110105,0,7162790.story

skevimc
01-05-2011, 06:58 PM
skevimc,

Could you let us know what are the Cobb angle of the curves that are classified as mild, moderate or severe in this study?

Thanks.

Mild = 10-25°
Moderate = 26-40°
Severe = "Progression to a severe curve was defined according to the usual clinical criteria (i.e., progression to a >40° curve in an individual still growing, or progression to a >50° curve in an adult)


Ah, that's very helpful (and the exact reverse of how I understood it). So, the best use of this test is in predicting the people who need the *most* treatment (those above 190), rather then in recommending less treatment for those with lower scores?

While there is strength in the "Positive predictive value" (PPV), which is what you are saying. The real finding of the study is more in the NPV "negative predictive value". But putting it all together show that those with a value <41 have an extremely low (>98%) chance of NOT progressing to >40° and those with a score >190 have ~ 97% chance of progressing beyond 40°. Or to put it another way, score <41 has <1-2% chance of progressing beyond 40°; score >190 has >97% of progressing beyond 40°.

They basically avoid using the PPV though, because they don't have the statistical power or confidence to prove it. As well, they say that the NPV is more clinically relevant than the PPV due to the percentage of over-treatment.

Pooka1
01-05-2011, 07:03 PM
The group to which you are referring is the "low risk group". This did not necessarily imply a small curve. This group was based on the population that generally gets referred to a doctor due to in-school screening. They then populated that group by selecting a specific percentage of patients for the mild-moderate-severe curves (85%, 12%, 3% respectively). It's kind of a weird way to pick the groups and I only partially understand why they did it. At any rate, of this group (n=277) there were 176 patients that had a score <41. Of these 176, 0 had a severe curve. Additionally, there were 101 patients with a score >40. 93 had a moderate-mild curve and 8 had a severe curve.

This is interesting. I will get the paper. Hopefully the reasoning is clever. I love that sort of thing.

Pooka1
01-05-2011, 07:08 PM
While there is strength in the "Positive predictive value" (PPV), which is what you are saying. The real finding of the study is more in the NPV "negative predictive value". But putting it all together show that those with a value <41 have an extremely low (>98%) chance of NOT progressing to >40° and those with a score >190 have ~ 97% chance of progressing beyond 40°. Or to put it another way, score <41 has <1-2% chance of progressing beyond 40°; score >190 has >97% of progressing beyond 40°.

They basically avoid using the PPV though, because they don't have the statistical power or confidence to prove it. As well, they say that the NPV is more clinically relevant than the PPV due to the percentage of over-treatment.

I imagine they had so few kids out at the high end of the graph and so many loaded towards the low end that all they could do is emphasize the negative prediction aspect. Maybe a literal handful. The positive prediction might be just as accurate but they can't know it if they didn't have enough patients in that range.

Pooka1
01-06-2011, 05:46 AM
I can't answer any of those questions. All I know is that the person who developed the test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.

Lonner didn't develop the test. Lonner is a surgeon in NYC. The group who developed it was out in Utah. These are the guys or at least these are the authors of the paper...

Ward, Kenneth MD*; Ogilvie, James W. MD*; Singleton, Marc V. MS*; Chettier, Rakesh MS*; Engler, Gordon MD†; Nelson, Lesa M. BS*

JessicaNoVa
01-06-2011, 06:01 AM
This is an interesting discussion. Based on what I know right now, if my daughter takes this test and has a low score I think we would continue with brace wear in the hopes that it would keep her curve as small as possible. Even if it would never progress past 40*, wouldn't keeping it under 20* be a better alternative than letting it get to 39*? We've been told that she'll probably eventually go back to her pre-brace curve once she's OOB. Would not wearing a brace lead to a larger end curve? I guess that's something for which we don't have an answer.

I have to qualify this by saying my daughter is a real trooper when it comes to wearing her brace. There are never any fights to get her to wear it. In fact, when I suggest she take it off for a little while and relax she won't do it if she's already had it off for an hour for PE or dance class that day. Maybe my attitude would be a little different if she considered it torture.

Pooka1
01-06-2011, 06:13 AM
http://adjust2it.wordpress.com/2010/12/05/dna-spit-test-springs-girl-12-from-scoliosis-brace/


In the months since ditching the brace, Marissa’s curve has receded from about 24 degrees to 10 degrees, Lonner said. It’s not clear why she improved so much, although natural regression does occur, he said.

A regression of 14*.

Also, there were 697 patients in the study and 75%, 24% and 1% were low, medium and high risk, respectively. Therefore:

Low - ~523
Medium - ~167
High - ~70

Also they stated the following:


Marissa is among the 2 percent to 4 percent of all youngsters older than 10 diagnosed with AIS, including about 30,000 who require braces and 18,000 who need spinal fusion surgery each year.

This seems to be saying that 60% of kids who wear braces go on to have fusion. This is not consistent with the claim that only about 20% of kids can be considered bracing failures. Can anyone verify the numbers in the quoted statement?

Pooka1
01-06-2011, 06:18 AM
Even if it would never progress past 40*, wouldn't keeping it under 20* be a better alternative than letting it get to 39*?


Yes of course but even if it does, you will never know if it was the brace or just natural history. See my post about what happened to the girl in the video AFTER they took the brace off.

There is a girl on the group who had a reduction in her lumbar curve while in brace. Because bracing is not claimed to reduce curves permanently as you stated yourself, that is almost certainly a spontaneous reduction not connected to being braced as in the girl in the Lonner video.

Also, there is no reason to assume your daughter would progress to 39*. Rather the odds are stacked the opposite way.

JessicaNoVa
01-06-2011, 06:51 AM
Yes of course but even if it does, you will never know if it was the brace or just natural history. See my post about what happened to the girl in the video AFTER they took the brace off.

Right, which is why I said that's something for which we wouldn't have an answer.


Also, there is no reason to assume your daughter would progress to 39*. Rather the odds are stacked the opposite way.

I see what you're saying, but if it did progress to 39* would we look back and wonder if it might have been less if she had worn a brace? For us, right now, her wearing the brace is the best thing we've got. And I'm fully aware that she might progress to 39* even with the brace and we'll look back and say, "well, that was a waste".

Pooka1
01-06-2011, 07:03 AM
Right, which is why I said that's something for which we wouldn't have an answer.



I see what you're saying, but if it did progress to 39* would we look back and wonder if it might have been less if she had worn a brace? For us, right now, her wearing the brace is the best thing we've got. And I'm fully aware that she might progress to 39* even with the brace and we'll look back and say, "well, that was a waste".

I think you know the score and have a great attitude. (smiley face)

Pooka1
01-06-2011, 07:11 AM
This seems to be saying that 60% of kids who wear braces go on to have fusion. This is not consistent with the claim that only about 20% of kids can be considered bracing failures. Can anyone verify the numbers in the quoted statement?

Whatever lay yahoo wrote this comment is simply assuming that all the kids who went on to fusion were first braced. That is clearly not the case. (smiley face) I assumed many if not most were because bracing is still the standard of care despite the evidence case bcaking it up.

But if the 20% brace failure rate is correct, and assuming the other numbers are correct about bracing and fusion then, in the limit, the number of kids who wore a brace and were fused accounted for only 1/3 of the fusions (20% of 30,000 compared to the 18,000). Is it possible that 2/3 of fusions are caught so late that they are not braced? Maybe. In my one daughter's case, she wasn't caught late but her curved moved very quickly. Maybe experienced guys know that very fast moving curves don't generally respond to braacing. Who knows. Maybe I'll ask the surgeon in June when I next see him, maybe for the last time.

hdugger
01-06-2011, 10:31 AM
This is an interesting discussion. Based on what I know right now, if my daughter takes this test and has a low score I think we would continue with brace wear in the hopes that it would keep her curve as small as possible. Even if it would never progress past 40*, wouldn't keeping it under 20* be a better alternative than letting it get to 39*? We've been told that she'll probably eventually go back to her pre-brace curve once she's OOB. Would not wearing a brace lead to a larger end curve? I guess that's something for which we don't have an answer.

Yes, that's the big question.

One of the papers I read from the scolioscore people emphasized that the other method of determining progression (based on xray, growth, etc) was inferior in part because it only told you whether or not someone was likely to progress 5 to 10 degrees, instead of telling you whether or not they'd progress to surgical.

But, IMO, knowing whether or not they'll progress 5 to 10 degrees *is* the question - it provides alot more information then simply whether or not they'll progress to surgery.

Again, I think the problem is that scoliosis patients are managed by surgeons, and surgeons (reasonably) tend to organize their thinking around surgery. But, as parents, surgery is not the main consideration - lifelong health is. So, for a parent, knowing whether your 20 degree child will progress past 25 degrees by maturity gives a far better view of their future then knowing whether they'll require surgery before they're 21.

hdugger
01-06-2011, 10:39 AM
Lonner didn't develop the test. Lonner is a surgeon in NYC.

To phrase it more precisely, then, if the physician partnering with the geneticists at Axial Biotech to develop the scolioscore test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.

Pooka1
01-06-2011, 10:50 AM
Yes, that's the big question.

One of the papers I read from the scolioscore people emphasized that the other method of determining progression (based on xray, growth, etc) was inferior in part because it only told you whether or not someone was likely to progress 5 to 10 degrees, instead of telling you whether or not they'd progress to surgical mind.

But, IMO, knowing whether or not they'll progress 5 to 10 degrees *is* the question - it provides alot more information then simply whether or not they'll progress to surgery.

The detection of 5* or 10* progression is simply the measurment error. That's the minimum AFTER THE FACT progression you can determine from looking at sequential radiogrpahs. You can't "know" a curve will increase 5 to 10 degrees just from a radiograph. Scoliscore is superior from the standpoint that it can predict BEFORE THE FACT if there will be progression >40%.

Reading radiographs tells you what happened. Doing scoliscore, depending on the score, can tell you if prorgession will be limited to <40*. As such it is incredibly more powerful than reading radiographs.


Again, I think the problem is that scoliosis patients are managed by surgeons, and surgeons (reasonably) tend to organize their thinking around surgery. But, as parents, surgery is not the main consideration - lifelong health is. So, for a parent, knowing whether your 20 degree child will progress past 25 degrees by maturity gives a far better view of their future then knowing whether they'll require surgery before they're 21.

There is no method of prediction whether a child will progress from 20* to >25* at maturity. Reading radiographs won't get you that.

And knowing whether your child will reach surgical range before maturity is huge in my opinion for several reasons.

Pooka1
01-06-2011, 10:52 AM
To phrase it more precisely, then, if the physician partnering with the geneticists at Axial Biotech to develop the scolioscore test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.

Is he any different than the other surgeons giving the tests to their patients? Are they all "partners" in the research?

hdugger
01-06-2011, 10:54 AM
The detection of 5* or 10* progression is simply the measurment error. That's the minimum AFTER THE FACT progression you can determine from looking at sequential radiogrpahs. You can't "know" a curve will increase 5 to 10 degrees just from a radiograph. Scoliscore is superior from the standpoint that it can predict BEFORE THE FACT if there will be progression >40%

I'm repeating the comparison from the scolioscore site. They compared their method to another method which predicted 5 to 10 degree progression, and dismissed the other method because it didn't focus on the important measure of progressing to surgery.

That's a very surgical-centric viewpoint, IMO. I understand why surgeons think it's the only thing that matters, but it's not the only thing that matters to parents.

skevimc
01-06-2011, 10:55 AM
To phrase it more precisely, then, if the physician partnering with the geneticists at Axial Biotech to develop the scolioscore test isn't saying that he's relying solely on its results. I'm guessing there's a reason for that.

They cover this idea somewhat in the discussion. How two people can have a similarly high scoliscore but one progresses to surgery and the other doesn't. The basic explanation is that, for both people, the genetic influence is present but the environmental influences are most likely different.

I would also opine/hypothesize that the range and variability of curves <40° and scores <180 point to a gravity type threshold. Once a curve progresses to a certain extent, it becomes difficult for the body to stabilize from a biomechanical stand point. The genetic influence for a larger curve is present, but the body is able to stabilize until it reaches ~40°. Then an entirely different set, or at least an additional set, of influences are acting on it.

Pooka1
01-06-2011, 10:59 AM
I'm repeating the comparison from the scolioscore site. They compared their method to another method which predicted 5 to 10 degree progression, and dismissed the other method because it didn't focus on the important measure of progressing to surgery.

But what is this other method? Isn't it reading and comparing serial radiographs and getting the answer AFTER THE FACT?


That's a very surgical-centric viewpoint, IMO. I understand why surgeons think it's the only thing that matters, but it's not the only thing that matters to parents.

No and it isn't the only thing that matters to surgeons. The problem is there is nothing available at the present time to help on any other front.

The issue is you are assuming they don't care about certain things for reasons OTHER than they simply have nothing to offer patients to help. All the caring in the world about keeping sub-surgical curves even more sub-surgical isn't going to produce an effective conservative treatment out of thin air. Surgeons do what they can.

hdugger
01-06-2011, 11:00 AM
Is he any different than the other surgeons giving the tests to their patients? Are they all "partners" in the research?

According to his site, he partnered with them during the development of the test, not just in using the test after it was developed.

Pooka1
01-06-2011, 11:03 AM
According to his site, he partnered with them during the development of the test, not just in using the test after it was developed.

Wouldn't this mean he is one of (several?) surgeons provided the patients that went into the calibration set that went into the subject article? They had to come from somewhere.

Were all the patients in the calibration set Lonner's patients?

hdugger
01-06-2011, 11:07 AM
But what is this other method? Isn't it reading and comparing serial radiographs and getting the answer AFTER THE FACT?

I don't believe so. They were comparing predictive tests.

I don't think this other test was sensitive, enough, btw, so I'm not comparing its efficacy. I'm only mentioning it because they thought the *goal* of the other test was inferior to the goal of predicting surgery.


No and it isn't the only thing that matters to surgeons. The problem is there is nothing available at the present time to help on any other front.

They specifically dismissed another measure because it didn't focus on surgery, which they regarded as being the important thing. That's a surgical focus which doesn't really take in the broad scope of what matters to patients.


The issue is you are assuming they don't care about certain things for reasons OTHER than they simply have nothing to offer patients to help. All the caring in the world about keeping sub-surgical curves even more sub-surgical isn't going to produce an effective conservative treatment out of thin air. Surgeons do what they can.

If conservative treatment doesn't work to keep kids under 30 degrees, then it equally doesn't work to keep children from surgery, right? It either does something or it doesn't. If that's the case, then there's no reason to pick one endpoint over another based on the treatment they can offer.

Pooka1
01-06-2011, 11:17 AM
If conservative treatment doesn't work to keep kids under 30 degrees, then it equally doesn't work to keep children from surgery, right?

No that doesn't follow. It's an easier target to keep sub-surgical curves even more sub-surgical than it is to keep surgical curves sub-surgical it would seem.

It could be that a re-crunching of the brace data to look at this specifically or designing better bracing studies going forward will show that for genetically subsurgical cases, bracing MAY keep sub-surgical curves even more sub-surgical. The main problem they will be up against is the measurement error apparently in that smaller angle range. So the data will be noisier.


It either does something or it doesn't. If that's the case, then there's no reason to pick one endpoint over another based on the treatment they can offer.

Well, given the UNKNOWN fraction of people who are <50* at maturity who will go on to need fusion for any reason, and the KNOWN fraction >50* who need fusion, the endpoint of sugery is the most definitive and defensible end point. For all we know, the vast majority of people <40* at maturity will never need fusion for any reason. We know for a fact some do but we don't know the percentage of the total.

hdugger
01-06-2011, 11:33 AM
No that doesn't follow. It's an easier target to keep sub-surgical curves even more sub-surgical than it is to keep surgical curves sub-surgical it would seem.

I think you're furthering my argument :). If conservative treatment is *more* effective in keeping small curves small, then isn't the under 30 crowd what our doctors should be focussing on? Why emphasize keeping kids from surgery, if that's the thing they actually *can't* do?

Pooka1
01-06-2011, 11:49 AM
I think you're furthering my argument :). If conservative treatment is *more* effective in keeping small curves small, then isn't the under 30 crowd what our doctors should be focussing on? Why emphasize keeping kids from surgery, if that's the thing they actually *can't* do?

Well firstly, that is a big "if." There is no evidence that any conservative treatment can keep small curves small. I am just surmising that it should be easier to keep less susceptible, smaller curves smaller than more susceptible curves from becoming larger. Ever showing the former is going to be daunting because the researchers are up against formidable impedicments including measurement precision. Also some large percentage of these smaller curves will never need fusion for any reason. So they are looking for a small signal against a huge background. And given some perhaps large fraction of these folks <40* will never need fusion for any reason, the ethics of bracing has to be considered and these studies might never be done from that standpoint (just to bring it back to the original thread issue).

Secondly, not all surgons admit they can't keep surgical curves subsurgical with conservative treatments. So avoiding surgery is and should be the the major focus from a practical standpoint and a percentages argument.

Ballet Mom
01-06-2011, 01:35 PM
http://adjust2it.wordpress.com/2010/12/05/dna-spit-test-springs-girl-12-from-scoliosis-brace/



A regression of 14*.

Also, there were 697 patients in the study and 75%, 24% and 1% were low, medium and high risk, respectively. Therefore:

Low - ~523
Medium - ~167
High - ~70




The girl used in the example should not have been used. A regression is obviously not going to be a typical experience for most of the people using the Scoliscore test and therefore can be classified as marketing and hype for the story.

I find it interesting that she has a score of 11. The girl in the story in the LA Times that I posted yesterday, had a score of 3. It appears her curve is not genetic at all and is due to needing a lift in her shoe.

It appears that only scores between 1 and 10 might actually be beneficial:


Ward said that a score between 1 and 10 shows no high risk factors for severe progression. "So far, we haven't seen any of those children develop a severe curve," he said. "Most of them don't even develop a progressive curve

You have to wonder how many patients score that low, and whether such an expensive test for the majority of the scoliosis population is worthwhile to bounce a few kids out of their braces.


Also they stated the following:


"Marissa is among the 2 percent to 4 percent of all youngsters older than 10 diagnosed with AIS, including about 30,000 who require braces and 18,000 who need spinal fusion surgery each year. "

This seems to be saying that 60% of kids who wear braces go on to have fusion. This is not consistent with the claim that only about 20% of kids can be considered bracing failures. Can anyone verify the numbers in the quoted statement?


There are 100,000 scoliosis diagnoses annually. 10% are juvenile cases, therefore less than the ten years old they're stating. 5% are infantile cases, also less than ten years stated. Adult scoliosis is apparently rare, so we'll ignore that. So basically, there are roughly 85,000 AIS cases annually. 18,000 fusion surgeries is a percentage of 21%. The small difference is probably due to the rapid progression cases that are hard to react to in time, and the unnoticed cases probably due to having a balanced double curve that is hard to identify until it's too late for bracing, and the small number of adult scoliosis cases, etc.

Ballet Mom
01-06-2011, 01:54 PM
Originally Posted by Pooka1
Is he any different than the other surgeons giving the tests to their patients? Are they all "partners" in the research?

According to his site, he partnered with them during the development of the test, not just in using the test after it was developed.

The article is stating that he has a financial interest in the success of the Scoliscore test. You have to give the author credit for that.

Axial Biotech is a venture-capital financed company. The venture capitalists providing the financing to develop this test and company expect a big payout at sometime in return for providing this financing.

These privately-held venture backed companies don't have cash to pay for services so they typically use options, warrants, convertible securities, etc. to pay for services. Once the company is taken public, insiders can become phenomally wealthy due to ownership of these investment options. The venture capitalists will be pressing HARD to take this company public so they can get an enormous return on investment.

I am truly thankful that my daughter is just about through her bracing journey and isn't going to be used as a test subject as they roll out this test to the general population.

hdugger
01-06-2011, 02:43 PM
I'm likewise suspicious, but I lean towards being suspicious by nature.

I would very much like to hear an evaluation of the test by an impartial SRS surgeon. I know Hart isn't signed up to administer it yet - maybe I'll ask him.

skevimc
01-06-2011, 02:53 PM
There are 100,000 scoliosis diagnoses annually. 10% are juvenile cases, therefore less than the ten years old they're stating. 5% are infantile cases, also less than ten years stated. Adult scoliosis is apparently rare, so we'll ignore that. So basically, there are roughly 85,000 AIS cases annually. 18,000 fusion surgeries is a percentage of 21%. The small difference is probably due to the rapid progression cases that are hard to react to in time, and the unnoticed cases probably due to having a balanced double curve that is hard to identify until it's too late for bracing, and the small number of adult scoliosis cases, etc.

Just a minor point. You can't use the number of new AIS diagnoses each year (assuming ~85k) and divide the number of fusions performed each year (18k) to get a percentage. The number of surgeries should be divided by the total number of AIS cases, e.g. 85k x 9. So 85k/year are added to the total number. Adolescents lasts ~ 10-18 years old. So at any given year there are about 765k AIS cases. From that group, there are 18k surgeries performed. Equals ~2%.

People make the same calculation mistake when they say that half of all marriages end in divorce. If there are 100 marriages every year and 50 divorces, you have to figure out what the average length of time a marriage lasts. This will dictate how big the pool is. Let's say it's 7 years. So in year #1 there are 100 marriages but they haven't gone long enough to get divorced yet. Then year #2 and so on...until year #7. So now there are 700 marriages and now there are 50 divorces. So there's 650 marriages +100 = 750 marriages - 50 divorces the next year = 700+100-50=750 the next year.

Sorry for the random discussion, but that calculation always bothers me.

Ballet Mom
01-06-2011, 03:04 PM
Just a minor point. You can't use the number of new AIS diagnoses each year (assuming ~85k) and divide the number of fusions performed each year (18k) to get a percentage. The number of surgeries should be divided by the total number of AIS cases, e.g. 85k x 9. So 85k/year are added to the total number. Adolescents lasts ~ 10-18 years old. So at any given year there are about 765k AIS cases. From that group, there are 18k surgeries performed. Equals ~2%.

People make the same calculation mistake when they say that half of all marriages end in divorce. If there are 100 marriages every year and 50 divorces, you have to figure out what the average length of time a marriage lasts. This will dictate how big the pool is. Let's say it's 7 years. So in year #1 there are 100 marriages but they haven't gone long enough to get divorced yet. Then year #2 and so on...until year #7. So now there are 700 marriages and now there are 50 divorces. So there's 650 marriages +100 = 750 marriages - 50 divorces the next year = 700+100-50=750 the next year.

Sorry for the random discussion, but that calculation always bothers me.

Thanks skevimc...I should have noticed that. I'm glad to hear it's only 2%.

Pooka1
01-06-2011, 03:05 PM
Just a minor point. You can't use the number of new AIS diagnoses each year (assuming ~85k) and divide the number of fusions performed each year (18k) to get a percentage. The number of surgeries should be divided by the total number of AIS cases, e.g. 85k x 9. So 85k/year are added to the total number. Adolescents lasts ~ 10-18 years old. So at any given year there are about 765k AIS cases. From that group, there are 18k surgeries performed. Equals ~2%.

So my calculation should have been:

Of the AIS cases, for each year:
30,000 "require" braces.
18,000 are fused

Assuming, kids wear a brace for average of 3 years then that would be 90,000 total kids wearing braces at any point in time.

So would it be 18,000 fusions into 90,000 for brace failures (assuming most of those kids are braced) for a rough estimate of 20%?

If that is correct, that same guy who estimated from that one study that 70% of kids are braced needlessly ALSO nailed the bracing failures!

I would like to meet that guy.

hdugger
01-06-2011, 03:24 PM
Of the AIS cases, for each year:
30,000 "require" braces.
18,000 are fused


This calculation assumes that "require braces" = "compliantly bracing"

That assumes 1) that everyone broadly estimated to require bracing is given a brace prescription and 2) that everyone receiving the prescription is compliant throughout the course of the prescription.

Those seem like two very large assumptions to make.

If you want to try an equivalent thought experiment, calculate the number of adults "requiring surgery" and the number of adults with curves above the surgical threshold. We can probably agree that that percentage is not a fair indication of surgical failure.

Pooka1
01-06-2011, 03:31 PM
This calculation assumes that "require braces" = "compliantly bracing"

That just makes it equivalent to the study where the 20% failure rate was generated. That is a good thing assuming the compliance rate was about the same. Both numbers are generated from an "observed" bracing + compliance." So the same ratio would result if the compliance rate was low in both cases or high in both cases. It just has to be similar in both cases. It is not a final number on bracing efficacy.


That assumes 1) that everyone broadly estimated to require bracing is given a brace prescription and 2) that everyone receiving the prescription is compliant throughout the course of the prescription.

Those seem like two very large assumptions to make.

There are always plenty of assumptions in this game. This is no exception. The point is that when independent lines of evidence converge, it strengthens both.


If you want to try an equivalent thought experiment, calculate the number of adults "requiring surgery" and the number of adults with curves above the surgical threshold. We can probably agree that that percentage is not a fair indication of surgical failure.

That's not equivalent. Why would it be?

Ballet Mom
01-06-2011, 04:08 PM
So my calculation should have been:

Of the AIS cases, for each year:
30,000 "require" braces.
18,000 are fused

Assuming, kids wear a brace for average of 3 years then that would be 90,000 total kids wearing braces at any point in time.

So would it be 18,000 fusions into 90,000 for brace failures (assuming most of those kids are braced) for a rough estimate of 20%?

If that is correct, that same guy who estimated from that one study that 70% of kids are braced needlessly ALSO nailed the bracing failures!

I would like to meet that guy.

I think without the actual numbers we're just playing guessing games. You can't just assume everyone was wearing a brace who gets fused. There are doctors who don't believe in bracing...I suspect their surgical rate is quite high. In the one surgeon's office I visited who didn't like bracing, I met lots of people who were just waiting to grow enough to be fused, without bracing. Some kids and families refuse bracing. Stapling still has the same fusion rate as bracing. Your first daughter wasn't even braced before fusion.

I've also seen a huge variety of times in brace, the standard doesn't even require bracing if you're diagnosed six months post-menarche, which I think is crazy. It's pretty obvious kids curves are increasing even past physical maturity to surgery, let alone six months after menarche. I personally think the US system needs to do a better job of figuring out how and when to brace then just chalking up all the scoliosis surgeries to an obviously flawed system of bracing.

And I still disagree that 70% of kids are braced unnecessarily. That is your opinion.

hdugger
01-08-2011, 01:43 AM
I'm likewise suspicious, but I lean towards being suspicious by nature.

I would very much like to hear an evaluation of the test by an impartial SRS surgeon. I know Hart isn't signed up to administer it yet - maybe I'll ask him.

I'd missed the actual quote which stated that Lonner had stock in the scolioscore company:

"Axial Biotech, the company that developed the test, is now working on versions that would apply to other ethnic and racial groups. The current version is based on tests of nearly 10,000 patients at 85 clinical sites around the world and is available at more than 50 spine U.S. centers. (Lonner has stock options in the company.) "

http://www.heraldtribune.com/article/20100817/ARTICLE/8171010?p=3&tc=pg

I generally like entrepreneurs and doctors as separate disciplines, but I really don't like entrepreneurial doctors. Don't we pay these guys enough of a living wage that they could forgo the ethical compromises?

Pooka1
01-08-2011, 07:24 AM
According to the authorship line on the validation study published in Spine, Lonner doesn't appear to have analyzed any samples, crunched any data, nor made any conclusions based on same.

ETA: Can someone with the paper check if Lonner is mentioned in the acknowledgment section and, if so, what for?

Thanks in advance.

skevimc
01-10-2011, 12:11 PM
According to the authorship line on the validation study published in Spine, Lonner doesn't appear to have analyzed any samples, crunched any data, nor made any conclusions based on same.

ETA: Can someone with the paper check if Lonner is mentioned in the acknowledgment section and, if so, what for?

Thanks in advance.

Lonner is not mentioned anywhere in the article.



I generally like entrepreneurs and doctors as separate disciplines, but I really don't like entrepreneurial doctors. Don't we pay these guys enough of a living wage that they could forgo the ethical compromises?

I understand your concern, but this isn't all that unusual. Clinicians involved in research frequently have various stock options or honorarium or other types of payments from biotech companies. In fact, they are usually highly sought after by the companies. As well, many times, it's the clinicians that have the best ideas because they are the ones practicing everyday. So they are intimately aware of the improvements that need to be made in daily practice. As long as they present their results in a peer reviewed publication I'm fine with that. I've been skeptical of scoliscore because on their website they've been advertising their validation study with >9000 patients, etc... But this data had yet to surface, until this article came out. It's the clinicians that remain somewhat secretive and keep everything highly guarded or don't publish the data that make me concerned. Doesn't mean that they're doing anything wrong. It just makes me highly skeptical. Then again, I have little to no interest in patents and other such stuff so I'm speaking about this somewhat naively.

The scoliscore would actually take money away from surgeons because the main point of the test is to be able to identify those patients that do not need treatment. So it's really meant to shrink surgical practices so they can focus on those patients that have a higher risk. As well, there's no treatment paradigm they are promoting or repeated genetic testing. So it's a one-time cost and that's it. They've also only included patients that have a clinically diagnosable scoliosis and say specifically that it is not for the general population, i.e. it shouldn't be used as an in-school screening type of test

Pooka1
01-10-2011, 12:23 PM
Lonner is not mentioned anywhere in the article.

Thank you for checking that. I am now dismissing concerns over Lonner possibly cooking any data just because he holds an interest in the test. Next.


I've been skeptical of scoliscore because on their website they've been advertising their validation study with >9000 patients, etc... But this data had yet to surface, until this article came out.

You can say that again. I was shocked that the test was being offered routinely ahead of peer review. That sort of thing doesn't not have a good track record in any field.

But I think what might be the deal is after the paper got through peer review, was accepted, and placed in the publication queue, they were free to offer the test. I don't know how long the queue is for Spine but I imagine it is quite long as that is viewed as the tippy top of the top shelf as far as I can tell. That paper may well have been accepted when the test was offered.

hdugger
01-10-2011, 01:43 PM
I understand your concern, but this isn't all that unusual. Clinicians involved in research frequently have various stock options or honorarium or other types of payments from biotech companies.

A straight payment would be fine. An ongoing financial involvement with the company doesn't sit so well with me, although I understand that it's common.

I can't quite work out the economics, but I'm guessing the financial impact of decreasing treatment to the low scoliscore patients is pretty negligible. The only change they talked about was possibly doubling the time between xrays. That has to be more than offset, for Lonner, by a cut of the profits if the test is routinely given to every patient between 9 and 13 with a small curve.

There was a fascinating article (maybe in New York Magazine? I can't quite recall), where they tried to trace back the causes of skyrocketing healthcare costs. After considering and discarding most of the usual suspects--malpractice costs, equipment investments, etc--the one thing they finally settled on that explained all of the data they had in front of them was 'entrepreneurship in medicine." Hospitals and doctors with an entrepreneurial bent drove up the cost of health care, when compared to hospitals and doctors without that bent.

Edit: Oops - New Yorker magazine - here's the link - http://www.newyorker.com/reporting/2009/06/01/090601fa_fact_gawande

Pooka1
01-10-2011, 02:12 PM
It is completely irrelevant if certain surgeons are making money if the product is needed and accurate.

It either is or isn't needed and it either is or isn't accurate.

That is the bottom line unless you are alleging data cooking. Are you?

It could be the world is so constructed that Scoliscore is necessary AND some folks make money. It is possible for BOTH things to be true.

hdugger
01-10-2011, 02:26 PM
I suppose each of us evaluate our surgeons in our own way. I was put off by Anand's investment in the minimally invasive hardware, and I'm put off my Lonner's involvement with the Scoliscore folk.

Pooka1
01-10-2011, 02:38 PM
Lonner isn't involved in the prove out and he didn't manufacture the need for Scoliscore.

He is no different than someone who is a friend of someone starting a venture capital business that addresses a need in society in an accurate way. Had you or I known about it maybe we could have gotten in on the ground floor.

The future belongs to the clever and the lucky.

jrnyc
01-10-2011, 03:02 PM
having met Anand for a consult one year ago, and seeing Lonner for follow up with my scoli, disc, etc. condition(s) for 6 years, i can tell you privately about both surgeons...my opinion as a patient, that is...

i don't pay much attention to predictive research, and personally, my small curves got large when my spine deteriorated as an adult...

jess

hdugger
01-10-2011, 03:10 PM
I'd be really interested in hearing your impressions, Jess. I don't have any sense that they're an ethical lapse here - I just wish doctors didn't have barely conscious reasons for wanting to see things in a certain way. It's hard enough to handle the complex variables they have to handle, without adding this kind of kink to the system.

jrnyc
01-10-2011, 05:35 PM
hey hdugger
am sending you a pm...

jess

Ballet Mom
01-10-2011, 07:08 PM
The scoliscore would actually take money away from surgeons because the main point of the test is to be able to identify those patients that do not need treatment. So it's really meant to shrink surgical practices so they can focus on those patients that have a higher risk. As well, there's no treatment paradigm they are promoting or repeated genetic testing. So it's a one-time cost and that's it. They've also only included patients that have a clinically diagnosable scoliosis and say specifically that it is not for the general population, i.e. it shouldn't be used as an in-school screening type of test

It is my opinion that this test may take a little money away from pediatric surgeons, but the real effect of this test (if used as proposed) will be to transfer the revenue from the large bracing market that helps children who would like not to have an increased deformity, to Scoliscore, its insiders and its venture capital backers plus enormous additional profits when Axial Biotech is taken public.

I predict the adult orthopedic surgeons will get increased business due to the increased progression rates of the larger resulting curves, leading to many more adult surgeries and much greater additional cost.

Once again, this is my opinion.

Ballet Mom
01-10-2011, 07:26 PM
Lonner isn't involved in the prove out and he didn't manufacture the need for Scoliscore.

He is no different than someone who is a friend of someone starting a venture capital business that addresses a need in society in an accurate way. Had you or I known about it maybe we could have gotten in on the ground floor.

The future belongs to the clever and the lucky.

I'm not sure why you keep implying that Scoliscore is accurate and needed. It doesn't appear to be either from the data we've been talking about. And I certainly don't know any kid or their parents that are going to be thrilled that their kid progressed to a very large deformity with high odds of progression as adults due to this test.

Scoliscore is interesting research and it should still be just that.

Pooka1
01-10-2011, 07:29 PM
I'm not sure why you keep implying that Scoliscore is accurate and needed. It doesn't appear to be either from the data we've been talking about. And I certainly don't know any kid or their parents that are going to be thrilled that their kid progressed to a very large deformity with high odds of progression as adults due to this test.

Scoliscore is interesting research and it should still be just that.

Tell that to all the kids sprung from their braces including that girl in the Lonner video.

Good luck.

Ballet Mom
01-10-2011, 07:34 PM
Tell that to all the kids sprung from their braces including that girl in the Lonner video.

Good luck.

How many kids do you think score between 1 and 10? And how many of these cases would have been in braces? Not many. Even between 1 and 10 the doc in the LA Times article stated that "most" of those who score between 1 and 10 don't become progressive. How accurate a test is that? And how needed?

If the kids aren't progressive, they wouldn't have been put in a brace in the first place....remember?

Pooka1
01-10-2011, 07:38 PM
How many kids do you think score between 1 and 10?

I'd have to see the calibration data. BTW, the girl in the video scored a 16 I think.

hdugger
01-10-2011, 07:48 PM
I'm still puzzled about the story in the video. She scored 16 on the test, but had a 25 degree curve to begin with and then had a big curve increase during her growth spurt (again, according to the video). I'm not sure what that adds up to, but I'm guessing she has to be at least over 30 degrees (25 + "unnamed big increase")

If that's a low-risk case, I'm a little puzzled about what a medium-risk case would look like.

I'm also not sure why she was put in the brace *after* the growth spurt. Aren't kids at 25 degrees-but-still-growing mostly already in brace?

Pooka1
01-10-2011, 07:58 PM
I'm still puzzled about the story in the video. She scored 16 on the test, but had a 25 degree curve to begin with and then had a big curve increase during her growth spurt (again, according to the video). I'm not sure what that adds up to, but I'm guessing she has to be at least over 30 degrees (25 + "unnamed big increase")

That doesn't sound familiar. I have to review the video yet again...


If that's a low-risk case, I'm a little puzzled about what a medium-risk case would look like.

The definitions are arbitrary in the sense that their exact value is chosen for a separate reason. Low is <50, medium is >50 and <180.

The scoliscore seems to predict a scoliosis "FAIL" irrespective of what the curve has done. It seems similar to my daughters' cases of pectus excavatum which were more than mild and less than severe. They resolved completely on their own and the chest walls are normal. I think of this as a pectus excavatum "FAIL." The development and disappearance of the PE seemed clearly under genetic (and likely not epigenetic) control because it happened simultaneously in both kids at the same stage of growth. N.B. My entire family was simultaneously NOT praying for the PE to resolve so I suppose I can't prove it wasn't due to no prayer whatsoever so there's that.


I'm also not sure why she was put in the brace *after* the growth spurt. Aren't kids at 25 degrees-but-still-growing mostly already in brace?

Don't know on either count.

Pooka1
01-10-2011, 08:19 PM
It keeps occurring to me that the opposition voiced on this forum to Scoliscore might actually rise to Neo-Luddism.

Sorry to say.

hdugger
01-10-2011, 08:47 PM
If an argument is wrong (in your opinion), engage the argument. Calling people luddites does nothing to elucidate or engage the ideas - it only elucidates your opinion of the motivations of the other people involved in the discussion. That's pop psychology at its worst.

Pooka1
01-10-2011, 08:56 PM
If an argument is wrong (in your opinion), engage the argument. Calling people luddites does nothing to elucidate or engage the ideas - it only elucidates your opinion of the motivations of the other people involved in the discussion. That's pop psychology at its worst.

Suggesting Luddism is part of the argument against your position because I can't find anything else in support. Yes I am at the bottom of the barrel because there is nothing else. In my opinion, that is the underlying "reason" driving every argument against Scoliscore at this point now that the data are out there. That is my counterargument.

Scoliscore, if it stands, appears to be the best thing to happen to ~75% of kids with AIS. What is your scientific argument against it other than it is new? The only thing you have is a on-starter about the cutoff being 40* and not 30*. The argument that bracing might keep sub-surgical curves even more sub-surgical is bolstered by even less evidence than for bracing to avoid surgery. It might be true but, knowing the precision and the range, it might be impossible to ever demonstrate. See my sig file.

hdugger
01-10-2011, 09:45 PM
It's never necessary to ascribe odd emotional motivations to people simply because you disagree with them. Unless, you know, you like that sort of thing. If you do, hey, I have a degree in psychology.

Your position, as I understand it, is that Scolioscore is a success because children can forgo bracing. My position is that forgoing bracing may not turn out to be a blessing if it means that a child's 20 degree curve turns into a 40 degree curve.

You can agree or disagree with my position, but I don't think it's a diagnosable indication of my precarious psychological condition, nor am I particularly interested in discussing whether or not I *have* a precarious psychological condition. If that's the crux of your argument against my position, we probably don't have anything further to discuss on this subject.

Pooka1
01-11-2011, 05:42 AM
It's never necessary to ascribe odd emotional motivations to people simply because you disagree with them.

How do you personally counter a non-argument? I'm now interested in light of what you wrote.

If you have advanced a viable argument in opposition then I don't know what it is. So far I think we have the following:

1. 40* versus 30* and the claim that braces might hold small curves smaller. The world seems so constructed such that while people might claim to know that, they might never be able to show it. And when we are talking 23 hour/day bracing, ethics intrude as they must.

2. Vague suggestions that the need and efficacy of Scoliscore might be illusory and that unconnected surgeons somehow have improved the data set.

I am not aware of any other positions.

These are non-arguments.


Your position, as I understand it, is that Scolioscore is a success because children can forgo bracing.

Epic win for them.


My position is that forgoing bracing may not turn out to be a blessing if it means that a child's 20 degree curve turns into a 40 degree curve.


That is neither here nor there if, as is actually the case in reality, that there is no conservative treatment that can change that natural history. You can't just KNOW it, you have to SHOW it when discussing 23-hour/day hard bracing of baby kids. You might also want to consider the people on here whose signatures suggest they were told they were done and the bracing worked. A rational explanation if the braces did indeed work (big "if") is that bracing only delayed surgery. In the past before the third generation instrumentation, that was a good thing. As the instrumentation improves, that argument that braces may only delay not avoid surgery will become increasingly harder to make.


You can agree or disagree with my position, but I don't think it's a diagnosable indication of my precarious psychological condition, nor am I particularly interested in discussing whether or not I *have* a precarious psychological condition. If that's the crux of your argument against my position, we probably don't have anything further to discuss on this subject.

We may not have anything to discuss then if you don't advance an argument.

Ballet Mom
01-11-2011, 09:49 AM
It is my opinion that this test may take a little money away from pediatric surgeons, but the real effect of this test (if used as proposed) will be to transfer the revenue from the large bracing market that helps children who would like not to have an increased deformity, to Scoliscore, its insiders and its venture capital backers plus enormous additional profits when Axial Biotech is taken public.

I predict the adult orthopedic surgeons will get increased business due to the increased progression rates of the larger resulting curves, leading to many more adult surgeries and much greater additional cost.

Once again, this is my opinion.


After further thought, I need to adjust this opinion to reflect that I don't believe this will decrease pediatric surgeons revenues at all. It should increase them. The reason is that apparently this Scoliscore test will be used not only to not brace kids, it appears this test is also hooked with the notion that those who do score high on Scoliscore will be sent to get vertebral stapling...even though results have shown that the same percentages progress to surgery with vertebral stapling as they do with bracing, at much greater cost and risk.

Ballet Mom
01-11-2011, 09:51 AM
I'm still puzzled about the story in the video. She scored 16 on the test, but had a 25 degree curve to begin with and then had a big curve increase during her growth spurt (again, according to the video). I'm not sure what that adds up to, but I'm guessing she has to be at least over 30 degrees (25 + "unnamed big increase")

If that's a low-risk case, I'm a little puzzled about what a medium-risk case would look like.

I'm also not sure why she was put in the brace *after* the growth spurt. Aren't kids at 25 degrees-but-still-growing mostly already in brace?

Can you post a link to this video? I cannot find this video that keeps getting tossed around. Thanks.

Ballet Mom
01-11-2011, 09:59 AM
How do you personally counter a non-argument? I'm now interested in light of what you wrote.

If you have advanced a viable argument in opposition then I don't know what it is. So far I think we have the following:

1. 40* versus 30* and the claim that braces might hold small curves smaller. The world seems so constructed such that while people might claim to know that, they might never be able to show it. And when we are talking 23 hour/day bracing, ethics intrude as they must.

2. Vague suggestions that the need and efficacy of Scoliscore might be illusory and that unconnected surgeons somehow have improved the data set.

I am not aware of any other positions.

These are non-arguments.



Epic win for them.



That is neither here nor there if, as is actually the case in reality, that there is no conservative treatment that can change that natural history. You can't just KNOW it, you have to SHOW it when discussing 23-hour/day hard bracing of baby kids. You might also want to consider the people on here whose signatures suggest they were told they were done and the bracing worked. A rational explanation if the braces did indeed work (big "if") is that bracing only delayed surgery. In the past before the third generation instrumentation, that was a good thing. As the instrumentation improves, that argument that braces may only delay not avoid surgery will become increasingly harder to make.

We may not have anything to discuss then if you don't advance an argument.

The fact that science can't prove that bracing is or isn't effective is a limitation of the science, not the bracing.

You are absolutely ignoring all the very valid statistics I have shown you over and over again. There is a reason for this. People can make their own judgments as to what that reason is.

leahdragonfly
01-11-2011, 10:08 AM
After further thought, I need to adjust this opinion to reflect that I don't believe this will decrease pediatric surgeons revenues at all. It should increase them. The reason is that apparently this Scoliscore test will be used not only to not brace kids, it appears this test is also hooked with the notion that those who do score high on Scoliscore will be sent to get vertebral stapling...even though results have shown that the same percentages progress to surgery with vertebral stapling as they do with bracing, at much greater cost and risk.


BalletMom, I just have to ask, how did you make the leap from scoliscore to VBS? I have read quite a bit of the scoliscore info and I have not seen a high score as an indicator that a child would be sent to VBS. VBS is simply an alternative to bracing (in some case years worth of bracing, such as my daughter was facing at age 6). Can you please provide a link?

And really, I try to ignore your more negative comments, but why do you insist on bashing VBS at every opportunity? Yes it is surgery and it carries risks and costs and is incredibly scary for the parents, but since you have no direct experience whatsoever with VBS, why do you feel it necessary to continually bad-mouth it? Not all kids will be nearly so lucky as your daughter to reach skeletal maturity with just a few years of night bracing. The rest of us are happy to have other options for our kids.

Gayle

Ballet Mom
01-11-2011, 10:39 AM
BalletMom, I just have to ask, how did you make the leap from scoliscore to VBS? I have read quite a bit of the scoliscore info and I have not seen a high score as an indicator that a child would be sent to VBS. VBS is simply an alternative to bracing (in some case years worth of bracing, such as my daughter was facing at age 6). Can you please provide a link?

And really, I try to ignore your more negative comments, but why do you insist on bashing VBS at every opportunity? Yes it is surgery and it carries risks and costs and is incredibly scary for the parents, but since you have no direct experience whatsoever with VBS, why do you feel it necessary to continually bad-mouth it? Not all kids will be nearly so lucky as your daughter to reach skeletal maturity with just a few years of night bracing. The rest of us are happy to have other options for our kids.

Gayle

I am not bad-mouthing VBS. I think it has its uses, especially for those high curves that bracing is not very effective and for kids who absolutely will not stand for bracing.

I am concerned with the VBS link to Scoliscore because it is mentioned in the articles posted touting Scoliscore, as the end result for those who obtain high Scoliscores by the doctors who are promoting Scoliscore...even though VBS isn't effective on the same percent as bracing. The Scoliscore results aren't going to change the failure rate of either bracing or VBS.

hdugger
01-11-2011, 11:03 AM
Can you post a link to this video? I cannot find this video that keeps getting tossed around. Thanks.

Sure, here's one - http://www.youtube.com/watch?v=FnxYxPk3b58

It's all over the web (again, one of those things that makes me cringe about entrepreneurship in medicine). Googling on Isabelle and Scoliscore brings up about 8 pages worth of entries, most of them separate postings of this video.

hdugger
01-11-2011, 11:12 AM
I am concerned with the VBS link to Scoliscore because it is mentioned in the articles posted touting Scoliscore, as the end result for those who obtain high Scoliscores by the doctors who are promoting Scoliscore...even though VBS isn't effective on the same percent as bracing. The Scoliscore results aren't going to change the failure rate of either bracing or VBS.

I had the sense, and it may be completely wrong, that VBS was preferentially offered to the JIS crowd. If that's true at all, then the Scoliscore test isn't going to affect that, since it has only been tested in the AIS population.

I do wonder, in a kind of early morning not enough coffee way, if the Scoliscore is measuring, in part, a receptiveness to bracing. Are the low risk kids unlikely to progress with no treatment? Or, since it was a retrospective study, are they just the kids who are most likely to respond to brace treatment. And, conversely, are the high risk kids the ones who are most likely to not respond to brace treatment (that is, not because they have aggressive curves, but because something in their curve growth makes bracing fail.)

This is just a thought experiment - there's no data one way or the other, as far as I know. But it does seem possible that Scoliscore is measuring something other than just likelihood of progression outside of any treatment protocol.

mariaf
01-11-2011, 11:44 AM
...even though VBS isn't effective on the same percent as bracing. The Scoliscore results aren't going to change the failure rate of either bracing or VBS.

Before you accuse me of anything, let me state that I am not asking this sarcastically, but can you please show us where you came across the data about the failure rate being the same for VBS and for bracing. I would really like to see it.

At this point, I'm not even getting into whether your data is right or wrong, but I have seen lots of data on VBS and have not seen the figures you refer to - hence, my interest.

Does anyone even know, or agree on, the failure rate of bracing?

One would need that to make the comparison to VBS, no?

Pooka1
01-11-2011, 11:54 AM
Maria,

I don't think the bracing failure rate is known with any certainty. That is a big part of the problem.

I have seen it estimated as ~20%, a number which comports with the extremely rough calculation based on bracing rate and fusion rate in AIS.

The rate of needless bracing seems more well known from Scoliscore and also other sources as ~70% - 75%.

Ballet Mom
01-11-2011, 11:59 AM
Sure, here's one - http://www.youtube.com/watch?v=FnxYxPk3b58

It's all over the web (again, one of those things that makes me cringe about entrepreneurship in medicine). Googling on Isabelle and Scoliscore brings up about 8 pages worth of entries, most of them separate postings of this video.

Thanks hdugger....I was googling Scoliscore and Lonner and couldn't come up with anything.

Isabelle had a 20 degree curve when she was diagnosed. They then watched and waited to see if she progressed, which she did. It looks to me that she couldn't possibly be over thirty degrees in the final portion of that video.

So, she has many family members with scoliosis, she has a progressive curve with probably a lot of growing to do and she is now unbraced. I hope we get follow-up as to the results of her Scoliscore journey. That would be the fair thing for Johnson & Johnson to show and place all over the net, wouldn't it?

Ballet Mom
01-11-2011, 12:02 PM
I had the sense, and it may be completely wrong, that VBS was preferentially offered to the JIS crowd. If that's true at all, then the Scoliscore test isn't going to affect that, since it has only been tested in the AIS population.

I do wonder, in a kind of early morning not enough coffee way, if the Scoliscore is measuring, in part, a receptiveness to bracing. Are the low risk kids unlikely to progress with no treatment? Or, since it was a retrospective study, are they just the kids who are most likely to respond to brace treatment. And, conversely, are the high risk kids the ones who are most likely to not respond to brace treatment (that is, not because they have aggressive curves, but because something in their curve growth makes bracing fail.)

This is just a thought experiment - there's no data one way or the other, as far as I know. But it does seem possible that Scoliscore is measuring something other than just likelihood of progression outside of any treatment protocol.

No, VBS is offered to AIS patients also. And I have read that Scoliscore is actually trying to make it's test available to the juvenile population also.

I personally think the most interesting thing this test shows is that the environmental influence on scoliosis is quite large.

Ballet Mom
01-11-2011, 12:36 PM
Isabelle had a 20 degree curve when she was diagnosed. They then watched and waited to see if she progressed, which she did. It looks to me that she couldn't possibly be over thirty degrees in the final portion of that video.

So, she has many family members with scoliosis, she has a progressive curve with probably a lot of growing to do and she is now unbraced. I hope we get follow-up as to the results of her Scoliscore journey. That would be the fair thing for Johnson & Johnson to show and place all over the net, wouldn't it?

I suppose this girl could be post-menarchal too, so perhaps she wouldn't be as high-risk as others, we don't know that important fact. We also don't know the big increase in the curve that she had, it could be 2 degrees for all we know, well within the measuring error range.

I think it's interesting in this article http://www.nytimes.com/2010/08/10/health/10brod.html , that it sounds like the girl was wearing a brace, and yet the x-ray shown is 8 degrees. When I first read that article, I assumed they had attached the incorrect x-ray to the article. Now, I believe that there's one heck of a lot of hype going on. Who would be bracing an 8* AIS curve?

It's the missing information in these articles that's important.

hdugger
01-11-2011, 01:02 PM
I *think* that's a stock photo. It's tagged "Getty Images," which is a supplier of stock photos.

Edit: Yeah, I just looked it up on the Getty Images site. Defintately doesn't have to do with this article - it says it's a stock photo of a boy's back.

mariaf
01-11-2011, 01:22 PM
I had the sense, and it may be completely wrong, that VBS was preferentially offered to the JIS crowd. If that's true at all, then the Scoliscore test isn't going to affect that, since it has only been tested in the AIS population.

You are not wrong, hdugger. In fact, you raise a good point.

The truth is, VBS is offered to the JIS crowd much more often than to the AIS crowd simply by virtue of the fact that one of the main criteria is that there must be 'significant growth remaining'.

From talking to Dr. Betz and others, I can tell you that they view the ideal candidate as someone MUCH more likely to be part of the JIS crowd than the AIS crowd so I agree with you about the Scoliscore test not having as much of an effect as people might think, in terms of VBS.

mariaf
01-11-2011, 01:25 PM
[QUOTE=Ballet Mom;115059]No, VBS is offered to AIS patients also./QUOTE]

In a few cases, that's true - but VBS is generally geared towards patients with 'significant growth remaining'. Therefore, AIS patients would be MUCH less likely to fit the criteria for VBS than JIS patients.

Pooka1
01-11-2011, 02:10 PM
Also, in the event of any VBS waiting list which I am gathering is not uncommon, the JIS cases should go to the front because they have fewer options and the prognosis on average is worse than for AIS. After that, I would push the lumbar AIS cases ahead.

Just my little lay opinion.

mariaf
01-11-2011, 02:18 PM
Also, in the event of any VBS waiting list which I am gathering is not uncommon, the JIS cases should go to the front because they have fewer options and the prognosis on average is worse than for AIS. After that, I would push the lumbar AIS cases ahead.

Just my little lay opinion.

That's a great example, Sharon, of all the things that are taken into account when the doctors make decisions about who is a VBS candidate and who isn't', which cases are given top priority, etc.

There is so much that is assumed about VBS, that isn't necessarily true, but people sometimes jump to conclusions. As you know, VBS is not cut and dry. It is for a select group of patients who meet certain criteria. And since the docs have tightened the criteria to include only this select group of patients (including those with significant growth left, among other things), those who are approved for VBS have had very good success rates. I would venture to say much higher than that of bracing.

But then, nodoby knows the success rate of bracing with any certainty, do they? :-)

Pooka1
01-11-2011, 02:34 PM
But then, nodoby knows the success rate of bracing with any certainty, do they? :-)

I think it is often quoted on this forum as elebenty million percent. :)

As far as I can tell, the most defensible figure can be no higher than 10% and that is only the "success" evaluated at the point of maturity. Maybe these 10% are the exact ones who progress later in life. Maybe the 70% who were apparently needlessly braced are the ones who do not progress later. Maybe it a mixture. Who knows.

Maybe Scoliscore can shed some light on this question. Maybe not. Who knows.

KJD
02-22-2011, 06:05 PM
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 could not help but respond to this... the "Or that Sharon thinks bracing is unbearable", I don't know how many times I have read that EXACT STATEMENT in one of her posts and cringed about it since my daughter is in a brace and we are trying the ... OMG... conservative treatment ... how dare we since there is no SOLID... CONCRETE proof that anything conservative works 100% of the time for all kids of ALL curve sizes... lol

oh but wait... surgery does not work 100% of the time either... or nobody would ever have a second surgery. somehow, curves continue to progress, a percentage of people who have had the surgery later in life are in great pain... oh how is that different from conservative treatment????

hdugger
02-22-2011, 07:04 PM
It's fairly easy to prove that surgery reduces curves - you go in in the morning with a curve of one size and you come out in the evening with a curve of less size. So, that makes the research pretty simple.

But, because the natural progression of curves is unpredictable, it is much harder to show that a treatment keeps a curve from progressing. That has nothing whatsoever to do with how effective bracing is or is not - it's simply a limitation of research in this particular area. No matter what the treatment is and no matter how effective it is, it would still be very hard to prove that it worked.

That leaves me to rely on surgeons to make sense of what they've seen and, in general, the majority of surgeons tend to feel that bracing works. Since that's the only data of any value I have, I also tend to believe that bracing works. I mean, I'm trusting these guys with my kids' spine - I have to believe in their ability to make sense of what they see.

Best of luck to your daughter. I think we all hope that every kid manages to avoid the surgery.

mamandcrm
02-22-2011, 08:41 PM
I don't have the impression that VBS is preferrentially offered to JIS patients. That might make sense from a cold clinical perspective, but I don't think that is how it works. I think it is the opposite; i.e., that it is offered on as "as available" basis (both with respect to surgeon and patient) to children who are viable candidates and more at risk to progress more rapidly to fusion, which more often is an AIS patient (10 and up). I may be wrong about that but that was my distinct impression while we were going through the process. And I don't necessarily think that is the wrong approach, and I am the mother of a JIS kid. If you are looking at a 25* JIS kid and a 35* AIS kid and you can only choose one for surgery, you probably should choose the latter, and send the JIS kid to bracing, with the idea that the JIS child may have a bit of time to play with. It's not a perfect system, obviously, but you work with your resources you have.

mariaf
02-23-2011, 07:35 AM
One of the major criteria for VBS candidacy has always been 'significant growth remaining'. So one could draw the conclusion then, that it would be geared to JIS patients, but also to some AIS cases (10 years old and up) where the patient has significant growth remaining.

There are also a host of other factors that are taken into consideration and each case is looked at individually.

As for comparing a JIS case at 25 degrees and an AIS case at 35 degrees, I can definitely see your point about the AIS case running out of options. That said, however, very often the 35 degree AIS case is turned away for VBS because, to the doctors' credit, if they don't feel that there is a very good chance of success they will not perform the surgery.

One of the things they found after reviewing nearly a decade of research is that curves under 35 degrees respond more favorably, in general, to VBS - and also that, as originally thought, significant growth remaining was also necessary for success.

Pooka1
02-23-2011, 07:51 AM
I just have a thought question...

If you can't get some kids to wear a hard brace the prescribed number of hours to avoid surgery, what are the chances they will wear the brace if they know they will be sub-sugical at maturity? And they know there is no evidence that bracing can keep sub-surgical curves even more sub-surgical?

I suggest the chances are low.

PT is a bit different if the kid is willing though the evidence case should be made clear to the kid. As for bracing, apparently you can't get some kids to stick with it even to avoid surgery so how can you get them to stick with it if they have a Scoilscore of <41?

I'd like to know the outcome of the group with a score of <41. Maybe 99% are below 30* at maturity. To read this group, there is a casual, often unstated, assumption that most of these kids are measuring 39.999* at maturity. That can't be correct.

mariaf
02-23-2011, 09:39 AM
You make some good points about compliance, Sharon.

Having a strong-willed (understatement) teenage daughter myself, I would certainly agree that for some kids there is NOTHING one can do to force brace compliance.

I even heard of one high school girl who would leave the house with her brace on, ditch it in the bushes outside her house, and put it back on before returning home.

Of course, the flip side is that you will also find kids willing to be compliant, whether it is in the hopes of avoiding surgery or just because they are less defiant by nature :-)

skevimc
02-23-2011, 12:58 PM
I'd like to know the outcome of the group with a score of <41. Maybe 99% are below 30* at maturity. To read this group, there is a casual, often unstated, assumption that most of these kids are measuring 39.999* at maturity. That can't be correct.

I'd like to see this data as well. How tight of a correlation is scoliscore with final curve size at maturity? They also used a bootstrapping method to build their model. I'm not as familiar with this but I know it involves making up data 100's of times based on the parameters of the original data-set. Statisticians use this quite a bit. A Stats course I'm auditing right now is covering bootstrapping next week. I like having a real life study I can use to 'learn' a new procedure.

Ballet Mom
02-23-2011, 03:09 PM
I'd like to see this data as well. How tight of a correlation is scoliscore with final curve size at maturity? They also used a bootstrapping method to build their model. I'm not as familiar with this but I know it involves making up data 100's of times based on the parameters of the original data-set. Statisticians use this quite a bit. A Stats course I'm auditing right now is covering bootstrapping next week. I like having a real life study I can use to 'learn' a new procedure.

Yes, I'd like to see this data as well....it certainly is interesting they chose to leave it out.

I used to work for a Chairman of a major corporation who called statisticians "number mast*rb*tors". They can massage any numbers to get whatever result they want. But I guess he lived his life in the real world where people have to be able to see through the b.s. to come up with the true answer.