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

[Pooka1]

Here's the abstract

http://journals.lww.com/spinejournal...ing_to.18.aspx

[Ballet Mom]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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?