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Thread: Changes in scoliosis treatment due to Scoliscore

  1. #226
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    Now what are you pair going on about?
    It seems Flerc is upset that Pooka is advocating for the end of needless bracing of patients, because he thinks that any form of prevention of the curve progression through bracing is a better option than taking the word of the scoliscore just in case the scoliscore is wrong.
    Whereas Pooka says that the effectiveness of bracing is unreliable anyway because there is no good evidence to say that bracing works. She thinks that the hardship and alienation that a adolescent endures through wearing the bracing is not valid now that the scoliscore test can provide us with some guidance as to who and who shouldn’t need to be braced for scoliosis.
    OK.
    If we were having this discussion 10 years from now it would be a different situation because there would be a lot more data on the reliability and accuracy of the scoliscore test. I guess we’re still in early days with this test and a cautious approach would be the correct one. And lets no forget that even though you pair might disagree on this, you both genuinely have the child or adolescents best interests at heart, which is the important thing.
    I think you are both right. The hard part is finding the fine line in between when people want everything to be simple back and white. You both bring up realistic situations, for which both your concerns are equally valid.
    I think it is important that patients not be braced needlessly, however I also think that no patient be denied the opportunity to be braced if there is any chance of progression.
    Pooka has made the conversation more complex by putting a number on it. 1%
    Would you brace your child if there was only a reported 1% chance the brace would be effective?
    What do you consider to be effective?
    Is it reducing the curve or just slowing or halting it through the growth stage?
    Honestly – I’m not sure I would want to put my child through the whole ordeal just to have to undergo surgery anyway if my child had a 99% chance of requiring surgery. But by the same account if there was a significant chance that bracing could slow or halt the progression even temporarily so that a better surgical outcome could be achieved, so that my child was better off in the long run, I’d have to seriously consider that. There’s no way any parent would want to see their child go through the pain and discomfort and alienation of wearning a brace especially if it was needless, but at the same time I’m sure most parents would try to get their kids to comply with the bracing regimen if they thought it was in their childs long term best interests.
    I guess its kind of like voting in an election. You never really have any good choices, but your forced to choose anyway.
    I guess as a parent, you have to take the time to investigate these things for yourself, not take just one practitioners word for it, get several opinions and talk to other people that have been in a similar situation and weigh up what is the best approch for your child yourself.
    Overall though given scoliscore is still relatively new, a cautious approach would be the right approach.
    And Pooka regarding your earlier post.
    I don’t generally have a problem with chiropractors administering the scoliscore test.
    I’d prefer patients and parents be more informed rather than remaining less informed.
    In fact the scolioscore test should be available over the counter at a drug store – no prescription needed. I can’t see how making it more available and accessible is a bad thing.
    If the chiropractor chooses not to brace a certain category of people then that proves that he’s generally not exploiting the test in order to brace everybody and increase his business.
    But I will agree there is a bit of room for people to be taken advantage of.
    Unfortunately some people believe everything they are told by people with some form of medical experience without taking the time to investigate and become more informed for themselves.
    These are the people at risk of being taken advantage of.
    People in business will try to turn things in their favor. It doesn’t always happen though some people are genuine. Whether it’s right or not it’s a fact of life. Money makes the world go round. It’s really up to the patient oriented scoliosis organisations to ensure that people are better informed to make the right decisions, and that people are smart enough to investigate things for themselves. At the end of the day it’s really up to the parent to make the right decisions for their child, and no-one else.
    You really can't criticise any parent given all they have is lousy choices in front of them to choose from.
    Realistically, they're damned if they do and damned if they dont. There arent any good choices.
    Hopefully in time, the scoliscore test might provide some certainty, and thats a good thing.
    Last edited by sjmcphee; 10-14-2011 at 03:34 AM.

  2. #227
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    Linda, thanks so much for contacting him! This is so great.

    Quote Originally Posted by LindaRacine View Post
    I think I may have interested Ken Ward in joining the forum and commenting on this subject. Here's his response to my question:


    AB has tried to act responsibly in how we offer Scoliscore:

    Axial only promotes the test to Scoliosis "experts".

    We require the Cobb angle and the ordering clinician's certification that other causes of scoliosis have been ruled out as a prerequisite for any test- this requirement means that we tend to work with centers with greater experience.


    Well this is pretty interesting. There is no way chiros can meet this requirement. I am not sure how they get the test kits.

    We inservice each site that has ScoliScore sample collection kits before they offer the test and we try to keep a dialog going as samples come in and results go out.

    Having said all that, we cannot stop chiropractors (or other non-surgeon or non-MD providers) from ordering a test or treating scoliosis if they have been granted privileges to order medical tests and treat scoliosis by their home state.
    Now I would like to know which states allow chiros to order medical tests. That sounds nutty.

    The Axial team has observed that some non-surgeon users provide truly exceptional support and care for their patients. Many actually co-manage patients with excellent surgeons and orthotists. Many understand the strengths and limitations of ScoliScore very well, and some chiropractors automatically refer all high ScoliSore patients to a surgeon for a consultation. While most chiropractic approaches to mild and moderate scoliosis management are unproven and some seem potentially harmful-- unfortunately, the track record is not much better for the mainstays of "traditional" AIS management.
    That last is true. There is no proven conservative or alternative treatment for AIS progression besides watch & wait.

    The physicians at Axial Biotech hope that appropriate use of ScoliScore will lessen unnecessary office visits, radiographs, bracing, and "medicalization" of an affected teen's life wherever mild AIS patients are seen. It is important that we try to educate all practitioners treating AIS. Chiropractors do play a large role in scoliosis care. For instance, we observed that approximately 30% of the 10,000 research study patients collected by Axial Biotech from leading SRS surgeon practices report that they tried chiropractic care at some point, often while they were also under the care of a surgeon expert. I am certain that many other mild AIS patients only see chiropractors.
    That's a great goal... to lessen medicalization (great word!) of AIS cases, especially since we know most small curves will not progress and there is no conservative treatment shown to stop progression.

    He has a good point about a lot of patients seeing chiropractors. Unfortunately, a lot of kids get referred up to specialists because a curve has been detected. If we saw even a small percentage of those patients in clinic, we'd have no time for anything else. What we want, and what is best for society, is for kids who have low scores to not get referred up. Unfortunately, as you know, chiropractors are going to overtreat the kids with low scores. But, perhaps that's better than having them get referred up, where they'll likely be x-rayed at least every 6 months.

    --Linda
    The problem with chiros offering the test is that it puts a "patina" of scientific credibility on their operation that it doesn't merit. Patients are confused enough. Chiros offering legitimate medical tests and then using those results to suggest various wacky "treatments" is a recipe for disaster in my opinion.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


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  3. #228
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    Flerc,

    I think the fact case surrounding bracing as it stands alone and all by itself WITHOUT Scoliscore triggers ethical questions. When you add any level of confidence from Scoliscore (and it is damn near 100% apparently but put any number in here you like), bracing only becomes even more ethically questionable.

    Just my opinion.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  4. #229
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    Quote Originally Posted by sjmcphee View Post
    Now what are you pair going on about?
    It seems Flerc is upset that Pooka is advocating for the end of needless bracing of patients, because he thinks that any form of prevention of the curve progression through bracing is a better option than taking the word of the scoliscore just in case the scoliscore is wrong.
    Whereas Pooka says that the effectiveness of bracing is unreliable anyway because there is no good evidence to say that bracing works. She thinks that the hardship and alienation that a adolescent endures through wearing the bracing is not valid now that the scoliscore test can provide us with some guidance as to who and who shouldn’t need to be braced for scoliosis.
    OK.
    Hey Scott, you got it in one. Very accurate read of the situation on your part.

    If we were having this discussion 10 years from now it would be a different situation because there would be a lot more data on the reliability and accuracy of the scoliscore test. I guess we’re still in early days with this test and a cautious approach would be the correct one. And lets no forget that even though you pair might disagree on this, you both genuinely have the child or adolescents best interests at heart, which is the important thing.
    Excellent point. And this is the reason I try to stay away from characterizing parents who are blindly bracing (i.e., everyone who braces) as being nonchalant about the hardship of wearing a hard brace 23 hours a day. Rather these parents are taking the hard road to the extent they have to continually enforce uncomfortable wear and they are clearly doing what they think is best. From my experience, It was hard to even see my kid in a brace. That just would make it all the more sad if/when it is definitively shown that bracing either doesn't work or efficacy can never be predicted ahead of time.

    (snip)

    What do you consider to be effective?
    I can't speak for anyone but myself but I suggest every parent here and elsewhere would say "avoidance of surgery for life due to progression or pain" as the definition of effective. To date, only watch and wait and certain surgeries approach that mark.

    (snip)

    I guess as a parent, you have to take the time to investigate these things for yourself, not take just one practitioners word for it, get several opinions and talk to other people that have been in a similar situation and weigh up what is the best approach for your child yourself.
    Yes in general but there are limits. One limit is the faith healer parents who are in jail over their "research" and obvious bad choices for their children. I am NOT saying that bracing is in that category. But there is a reason some say bracing is for the parents.

    Overall though given scoliscore is still relatively new, a cautious approach would be the right approach.
    And Pooka regarding your earlier post.
    I don’t generally have a problem with chiropractors administering the scoliscore test.
    I’d prefer patients and parents be more informed rather than remaining less informed.
    In fact the scolioscore test should be available over the counter at a drug store – no prescription needed. I can’t see how making it more available and accessible is a bad thing.
    That's an interesting perspective I had not considered. But obviously over the counter is far better than chiros offering it because it will be coupled in the chiro office with a recommendation for wacky treatments... vibrating chairs, modified handheld jigsaws, etc. etc. Chanting is superior than chiro because it is as effective and is free.

    (snip)

    You really can't criticise any parent given all they have is lousy choices in front of them to choose from.
    Realistically, they're damned if they do and damned if they dont. There arent any good choices.
    Hopefully in time, the scoliscore test might provide some certainty, and thats a good thing.
    Agreed.
    Last edited by Pooka1; 10-14-2011 at 01:45 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #230
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    Quote Originally Posted by LindaRacine View Post
    I think I may have interested Ken Ward in joining the forum and commenting on this subject.
    He would be a great addition to this section.

  6. #231
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    Quote Originally Posted by Pooka1 View Post
    Flerc,

    I think the fact case surrounding bracing as it stands alone and all by itself WITHOUT Scoliscore triggers ethical questions. When you add any level of confidence from Scoliscore (and it is damn near 100% apparently but put any number in here you like), bracing only becomes even more ethically questionable.

    Just my opinion.
    If it is 100% safe, then with a low value would not have any sense any kind of treatment or controls (as x-rays as it seems to be one of the main purpose) Statistical deductions could never assure that, but anyway if statistics in this case are so strong (100% or close), all the information leading to that claim should to be available for everyone wanting to be sure about that.. if a parent decide to not do any control, he must to know in what he is trusting.
    What would triggers ethical questions would be surgeons (or any other professional) just only saying Hey, trust in what Im saying, scolioscore is 100% safe, your son not need any kind of control or treatment..

  7. #232
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    Quote Originally Posted by flerc View Post
    What would triggers ethical questions would be surgeons (or any other professional) just only saying Hey, trust in what Im saying, scolioscore is 100% safe, your son not need any kind of control or treatment..
    Surgeons don't say that NOR do they say there is good evidence bracing works. They may think it works but will admit there is no good evidence. That's an example of an intellectually honest scientific statement.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  8. #233
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    Quote Originally Posted by flerc View Post
    If it is 100% safe, then with a low value would not have any sense any kind of treatment or controls (as x-rays as it seems to be one of the main purpose) Statistical deductions could never assure that, but anyway if statistics in this case are so strong (100% or close), all the information leading to that claim should to be available for everyone wanting to be sure about that.. if a parent decide to not do any control, he must to know in what he is trusting.
    What would triggers ethical questions would be surgeons (or any other professional) just only saying Hey, trust in what Im saying, scolioscore is 100% safe, your son not need any kind of control or treatment..

    Scoliscore has a near perfect prediction of those who will progress >40 or 50. Their findings, if I'm remembering the numbers correctly, were that someone with a score of >190 had a 99% risk of progressing to the 'surgical' range. They were less confident, although still pretty confident, about the other end of the scale in saying that someone with a low score (<41) has a very low risk for progression >40. The issue is that it's conceivable that someone with a score of 40 could still progress to 35, which puts them in a range for potential surgery later in life. For me, this does not make the test a bad investment because it can accurately screen those who will develop a large curve during adolescence.

    In the study, I'd like to see a chart of scores and curve sizes at 18 years old. For example, how well do the lower scores correlate with lower curve sizes? Does a score of 30 mean you'll most likely have a curve smaller than someone with a score of 60? Would a score of 20 indicate a curve that won't grow beyond 30? I know they weren't powered to find that and would be a difficult thing to show if that's even the case. There are clearly other factors influencing curve size. But to know if my kid was definitely headed for surgery or probably not, would be a big deal for me.

  9. #234
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    Quote Originally Posted by flerc View Post
    What would triggers ethical questions would be surgeons (or any other professional) just only saying Hey, trust in what Im saying, scolioscore is 100% safe, your son not need any kind of control or treatment..
    Quote Originally Posted by Pooka1 View Post
    Surgeons don't say that.
    It's really good to know that

  10. #235
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    After reading one of Linda's posts a couple of days ago, (I can't quote her exactly - I spent ages looking for the post but I couldn't it again.)
    She said something along the lines of - Their aim was to stop having patients that are diagnosed with small curves through school screening referred up to clinic.
    She also said that if all the patients that were diagnosed with small curves were referred up to clinic then they would not have any time to treat other patients.

    The last couple of days I've been thinking to myself that I truly cannot comprehend what the health system is like in the USA.

    I thought to myself this can't be right - Why would you NOT want people diagnosed with scoliosis to see a specialist.

    In Australia, where I live I just can't envisiage a situation like this, can't comprehend it.
    If you were diagnosed with scoliosis through school screening the first thing that would happen is the school would notify the parents and the parents would take the child to see a GP. The GP might send the patient directly to an ortho depending on the severity of the curve or may choose to monitor it to see if it progresses. If it does progress he definately would refer the patient to a specialist. And the government pays either all or most of the health costs, depending of whether its a specialist at a hospital or one who has a private practice. In the case of a specialist with a private practice you might be up for maybe $60 or $70 out of pocket expense.
    I'd be pretty surprised if a patient even gets past 25 - 30 degrees in my country without already seeing a specialist.
    My country doesn't decide who does and who doesn't get access to medical treatment based on how much you earn.
    Everyone in my country is allowed to get certain standard of health care free of charge, and I'm fairly sure this includes bracing and spinal fusions.
    If you want a better standard of care you pay extra yourself for private hospital cover, where you can choose your own doctor and sometimes get your own room whilst in hospital.
    I would find it very surprising if a single nurse or GP in my country would have an attitute where they don't want patients to get the opinion of a specialist.
    In my country it would be the opposite. They would be pushing you to the specialist.
    If a parent didn't take that child to see a specialist, they'd soon probably have social workers from The Department of Childrens Services on their ass for neglecting their child.
    I know that Linda genuinely cares for the health and wellbeing of scoliosis patients, I just cant for the life of me comprehend what it's like to have your health system.
    One which chooses who does and who doesn't get treatment, or access to it.

    We've only got around 25million people here though, and you guys have over 600million.

    - Scott
    Last edited by sjmcphee; 10-15-2011 at 11:58 PM.

  11. #236
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    Quote Originally Posted by sjmcphee View Post
    After reading one of Linda's posts a couple of days ago, (I can't quote her exactly - I spent ages looking for the post but I couldn't it again.)
    She said something along the lines of - Their aim was to stop having patients that are diagnosed with small curves through school screening referred up to clinic.
    She also said that if all the patients that were diagnosed with small curves were referred up to clinic then they would not have any time to treat other patients.

    The last couple of days I've been thinking to myself that I truly cannot comprehend what the health system is like in the USA.

    I thought to myself this can't be right - Why would you NOT want people diagnosed with scoliosis to see a specialist.

    In Australia, where I live I just can't envisiage a situation like this, can't comprehend it.
    If you were diagnosed with scoliosis through school screening the first thing that would happen is the school would notify the parents and the parents would take the child to see a GP. The GP might send the patient directly to an ortho depending on the severity of the curve or may choose to monitor it to see if it progresses. If it does progress he definately would refer the patient to a specialist. And the government pays either all or most of the health costs, depending of whether its a specialist at a hospital or one who has a private practice. In the case of a specialist with a private practice you might be up for maybe $60 or $70 out of pocket expense.
    I'd be pretty surprised if a patient even gets past 25 - 30 degrees in my country without already seeing a specialist.
    My country doesn't decide who does and who doesn't get access to medical treatment based on how much you earn.
    Everyone in my country is allowed to get certain standard of health care free of charge, and I'm fairly sure this includes bracing and spinal fusions.
    If you want a better standard of care you pay extra yourself for private hospital cover, where you can choose your own doctor and sometimes get your own room whilst in hospital.
    I would find it very surprising if a single nurse or GP in my country would have an attitute where they don't want patients to get the opinion of a specialist.
    In my country it would be the opposite. They would be pushing you to the specialist.
    If a parent didn't take that child to see a specialist, they'd soon probably have social workers from The Department of Childrens Services on their ass for neglecting their child.
    I know that Linda genuinely cares for the health and wellbeing of scoliosis patients, I just cant for the life of me comprehend what it's like to have your health system.
    One which chooses who does and who doesn't get treatment, or access to it.

    We've only got around 25million people here though, and you guys have over 600million.

    - Scott
    Moved this post to the appropriate forum. Please don't highjack other threads.

    The answer to this is very simple. The medical system cannot possibly handle everyone with a 10 degree scoliosis curve. The vast majority of children with curves 10-20 will never need treatment. There is somewhere in the neighborhood of 20 million kids between the ages of 10-14 in the U.S. If 10% of them have 10 degree curves, that's 2,000,000 kids. Somewhere in the neighborhood of 1.5 million of them will never need treatment. My cheapo calculator can't even imagine what it would cost to treat all those kids needlessly.
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  12. #237
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    Quote Originally Posted by LindaRacine View Post
    My understanding is that they used a very large database of adults on whom they had medical history. Then, they asked adults with scoliosis, whose outcomes were known, to add their genes to the database. I don't have a copy of the study being discussed, but I've heard the Axial Biotech pitch several times, so I'm relatively familiar with the data. As usual, before they started marketing the service, they took half the database, and scored it. Then they used the other half of the database to validate it. The validation charts are very impressive. For the tests that have been done to date, the only patients whose predictions have failed (I.e., the patient had a low score, but their curve(s) progressed significantly), have all had an underlying, unreported issue (e.g., undiagnosed congenital vertebra).

    I'm pretty skeptical by nature, and almost always resistant to sales pitches, and have a low bullshit threshold. My bullshit meter never went off with the AB guys. I don't know what their motivation was in the beginning, but it appears that they'll never be profitable. But it appears that they're going to stick with it, even though they suspect there won't be any more money coming from investors, because they feel there's a huge benefit to society.
    I gave my DNA to this study as an adult. However, they didn't give me the scoliscore test to see what my scoliscore is. As far as I know they collected the data from us (adults), but that's it. It would be valuable to know the scores of the adults from which this test was derived, and as far as I've seen no such data has been given, at least not to individual participants. We got squat as far as knowing anything they were doing or how the study was conducted. If Dr. McIntire could get his hands on the scoliscores of those in the study, then he could use that as a control group if they meet his criteria for his study control.

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    Forgive my ignorance but, the test of the scoliosicore effectiveness (statistics and all the process involved), have been done by a Gubernamental Organization, no? Which?

  14. #239
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    Quote Originally Posted by flerc View Post
    Forgive my ignorance but, the test of the scoliosicore effectiveness (statistics and all the process involved), have been done by a Gubernamental Organization, no? Which?
    I don't understand your question, but the ScoliScore test was created by Axial Biotech. It is either administered by the treating doctor, or in the case of us adults who donated our DNA, by Axial Biotech. Axial Biotech is not a governmental organization.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
    I'm sarcastic... what's your super power? --Unknown
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    I was referring to the test about the product (scolioscore) done by AB. The reliability of course should to be measured by other organization before it could be used.

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