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Thread: More Good Evidence Bracing Works in AIS

  1. #61
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    Quote Originally Posted by Pooka1 View Post
    I have often surmised there to be a chasm between the thoughts and feelings of the people who have to wear a hard brace versus the thoughts and feelings of those who don't. Here is a study on just patients... I think someone posted another study and patients and parents but I can't find it and may not be remembering correctly. I highlighted the first sentence of the conclusion section which is relevant to this discussion. Please feel free to post articles with opposite findings but it will not chance a thing on the ground. Nobody needs to read this study or any study to understand this issue after they witness bracing.

    http://www.ncbi.nlm.nih.gov/pubmed/20023605

    Spine (Phila Pa 1976). 2010 Jan 1;35(1):57-63.
    Patients' preferences for scoliosis brace treatment: a discrete choice experiment.
    Bunge EM, de Bekker-Grob EW, van Biezen FC, Essink-Bot ML, de Koning HJ.
    There is a second study: Preference assessment of recruitment into a randomized trial for adolescent idiopathic scoliosis. Dolan et al 2008

    In both studies treatment effectiveness does heavily influence decision making. Treatment effectiveness for bracing is deemed as avoiding surgery, i.e. reduction risk. Although in the second study it's defined as, brace failure = progression >=50°. All options are presented in the short-term. That is, reducing the risk for surgery before skeletal maturity. The first study used patients that were braced only, braced and then surgery, and surgery only. All three groups preferred their own treatment history. However, comfort was also a very important determinant.

    From the study:
    ● Brace treatment effectiveness, brace comfort, total treatment duration, and visibility of the brace were all relevant to patients’ preferences for brace treatment.
    ● Effectiveness and comfortable wearing of a brace proved to be the most important determinants for IS patients’ preferences.
    ● Patients were prepared to initiate treatment with a Boston brace if the brace would reduce the need for surgery by 53%.
    Reducing the need for surgery by 53%. Risk reduction is defined from the second study as:
    This task asks the subject to consider possible surgical rates after observation and bracing, while considering the side effects and inconveniences of bracing. The baseline surgical rate for both treatments was set at 60%. The subjects were asked to choose their preferred treatment when surgical rates were equal, and then again as the surgical rate after bracing was decreased from 60% to 50%, 40%, 30%, 20%, 10%, and 0%. The surgical rate at which the subjects prefer bracing over observation is an estimate of their required risk reduction, given their perceptions of the bracing experience.
    So a reduction from 60% to 30% would be a 50% reduction.

    Both studies have a lot more data and stratification in them but I think highlights that "treatment effectiveness" is explicitly viewed and presented to patients and families as preventing progression and/or surgery before skeletal maturity. And I don't think that is the best way to present management options. As well, it's unclear exactly how surgery was presented in these studies. They are focused primarily on finding out what is important to make the decision to brace, not whether or not to have surgery. So it's weighted towards the negatives of bracing in an attempt to improve study recruitment, brace development, or study design.

    One interesting thing from the Dolan paper:
    It is reasonable to expect adolescents to overwhelmingly prefer observation to bracing. Wearing a brace is not fashionable and can cause skin irritation and other inconveniences. Even when adolescents believe in the relative benefit of bracing in terms of long-term health and appearance, they often value current comfort over some future benefit.
    The author I think is opining a bit here, but does say that the data supports this general finding, i.e. pre/teen girls don't want to wear a brace and would choose observation.

  2. #62
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    Quote Originally Posted by Kevin_Mc View Post
    The author I think is opining a bit here, but does say that the data supports this general finding, i.e. pre/teen girls don't want to wear a brace and would choose observation.
    Thanks for posting that second study. I either forgot about it or never knew about it... my memory is slipping.

    Correct me if I'm wrong but I think you are agreeing that these entire study designs are indeed fashioned around "surgery avoidance" as the goal of bracing and therefore assess how much risk of surgery is tolerated in exchange for wearing a brace, yes? But that you are taking issue with fashioning studies around that question, yes? Also, suggest it is not a random population but a "primed" population on some idea, yes?

    I definitely agree there is "priming" associated with bracing and surgery in the minds of kids. That will matter in these studies. I don't necessarily think they or any psych-based studies are particularly tight because of these issues that can easily influence the results. It's almost like the final number is mostly a measure of the confounding variables. I also think the answers about acceptable risk change dramatically as they actually try to wear the brace. Or maybe I don't understand what is going one.

    But again, I would be shocked if there was even one parent out there who doesn't tell their kid to wear the brace to hopefully avoid surgery as opposed to stopping progression WITHOUT stating why it is important to stop progression. If you told a kid the goal was to just stop progression never mention surgery, they are eventually going to ask why it important because bracing is such a hard treatment. And then the surgery avoidance card will be played every time. Kids may start out willing to wear a brace to hopefully not look so twisted but once into the treatment, I bet most if not all reconsider if they know surgery exists to stop progress and simultaneously address cosmesis.

    I would be more shocked if surgeons didn't tell every single child that the brace treatment is hopefully to avoid surgery.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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  3. #63
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    Quote Originally Posted by hdugger View Post
    I thought pain and progression were the reasons for approving surgery in adults - I'm not sure why that isn't considered sufficient in your case. You must be pretty close to/over 50 degrees if you used to be 39 degrees and you've advanced at least 10 degrees, and we were told that my son was "surgery worthy" at 50 degrees as an adult.

    Are they telling you that they're just waiting until you hit some magic number? Or do they have some other reason for delaying - like not being sure that the surgery will address the pain?
    My major curve isn't progressing as fast as the secondary curve that is now structural. About a year and a half ago it was at 46 and 38. He wants me to be 60*. Why? I dont' know.

  4. #64
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    Quote Originally Posted by hdugger View Post
    Bracing to prevent surgery *in adults* is a Pooka-only artifact. I've never seen it used as a measure of success in any research, nor as a reason to brace offered to any parent/patient.
    You are confusing how researchers establish progression within a scientific study and the goal of bracing.

    The snippets you posted were addressing the issue of stopping progression versus correcting a curve, not the overarching goal of bracing which is quite clearly to avoid surgery FOR LIFE both from the perspective of the patients and the surgeon.

    There is not a single person who is ever told as you claim that bracing is done to prevent progression ONLY during childhood and that it has no bearing on progression in adults. If you told kids that you would have zero or near-zero compliance from any kid with a brain. As it should be.

    If it doesn't make sense then it probably isn't true. The claim that bracing is meant to only stop progression in childhood and that has no bearing on adults doesn't make sense. We know certain things about propensity to progress in adults given various Cobb angles.
    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. #65
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    Quote Originally Posted by hdugger View Post
    I'm pretty sure 60 degrees is not the insurance cut-off, but Linda would know for certain. Does he think that surgery would address the pain?
    He's afraid that with my low BMI and the location of the curve that it wold make my pain worse. Although, when he talked to me about it when I first saw him, he pretty much said that I would need hardware removal after about a year, so if I had surgery that I would pretty much be committing myself to two surgeries. But I have been in a LOT of pain for a long time. I have been on and off of pretty strong narcotics since I was about 29 and I'm almost 43 now. When I have these pain spells, they are lasting for years. I was on oxycontin for about two years in my early 30's late 20's. This time it will be three years in January. I don't want to live my life on narcotics. If surgery doesn't eliminate the pain, I'll still be on narcotics. Either way, I'm on narcotics. If the surgery is a success, I at least have a chance at a largely reduced drug intake or drug free life.
    Last edited by rohrer01; 11-05-2011 at 10:56 AM. Reason: added thought

  6. #66
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    Quote Originally Posted by Kevin_Mc View Post
    Both studies have a lot more data and stratification in them but I think highlights that "treatment effectiveness" is explicitly viewed and presented to patients and families as preventing progression and/or surgery before skeletal maturity. And I don't think that is the best way to present management options. As well, it's unclear exactly how surgery was presented in these studies. They are focused primarily on finding out what is important to make the decision to brace, not whether or not to have surgery. So it's weighted towards the negatives of bracing in an attempt to improve study recruitment, brace development, or study design.
    If, as a parent, I knew this piece to the puzzle, AND I had insurance coverage for my child, I would opt for surgery. Many young adults and many older adults don't have insurance or adequate insurance. Again, we come into the realm of what Linda stated earlier of being responsible young people and choosing carreer paths that will give them good coverage. But realistically, most young adults don't think past tomorrow, it's in their brain development. Most young people think "it will never happen to me". That's why we have so much alcohol and drug abuse, even among the so-called "responsible" young people that opt for college educations. So to me, it kind of sounds like passing the buck. Instead of the parent taking control of the issue when their child is covered by insurance (even if they are not covered, groups like Shriners will take care of the kids without insurance), they just postpone it and push it into the realm of making it their childs responsibility when they grow up. I know no one consciously thinks that way, but that is what is basically happening if you are just postponing an inevitable surgery. I don't see many charity groups out there that are willing to help adults, because we are supposed to be "responsible" and take care of ourselves. Sadly, poverty remains. There are more poor people out there than rich people and the adults that could have been helped as kids are left to suffer.

  7. #67
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    Quote Originally Posted by hdugger View Post
    I'm pretty sure 60 degrees is not the insurance cut-off, but Linda would know for certain. Does he think that surgery would address the pain?
    There is no insurance cut-off that I know of. I think each patient is evaluated based on their particular issues.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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  8. #68
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    A few new studies on this issue below. I think the first one may be a bit misleading, as degenerative changes usually start when people are 45-50.

    http://www.ncbi.nlm.nih.gov/pubmed/22037534

    Spine (Phila Pa 1976). 2011 Oct 27. [Epub ahead of print]
    Long-Term Clinical Outcomes of Surgery for Adolescent Idiopathic Scoliosis 21 to 41 Years Later.
    Akazawa T, Minami S, Kotani T, Nemoto T, Koshi T, Takahashi K.
    Source
    From *Department of Orthopedic Surgery, Seirei Sakura Citizen Hospital †Department of Orthopedic Surgery, Graduate School of Medicine, Chiba University, Chiba, Japan.
    Abstract
    ABSTRACT: Study Design. A case control study.Objective. To determine the clinical outcome of middle-aged patients surgically treated for adolescent idiopathic scoliosis and compare their outcomes to assessments of age- and sex-matched healthy controls.Summary of Background Data. Several long-term follow-up studies have been published on the clinical outcomes of surgical treatment for adolescent idiopathic scoliosis in patients who have reached their 20s or 30s. However, clinical outcomes in patients who have reached middle age remain unknown.Methods: This study included 256 patients surgically treated for adolescent idiopathic scoliosis (AIS) between 1968 and 1988. The Scoliosis Research Society Patient Questionnaire (SRS-22) and Roland-Morris Disability Questionnaire (RDQ) were used for evaluating long-term clinical outcomes. Sixty-six (25.8%; 62 females, 4 males; mean age, 46.0 years [range 34-56]) of the 256 patients responded to the questionnaires. The mean follow-up period was 31.5 (range 21-41) years. Seventy-six healthy age- and sex-matched individuals with neither a history of spinal surgery nor scoliosis were selected as a control (CTR) group.Results. Based on SRS-22 responses, AIS patients had significantly decreased function (AIS: 4.3±0.6, CTR: 4.7±0.5, p<0.01) and decreased self-image (AIS: 3.0±0.8, CTR: 3.7±0.5, p<0.01) in comparison with the controls, but the two groups were similar with respect to pain (AIS: 4.3±0.6, CTR: 4.2±0.5, p = 0.14) and mental health (AIS: 3.9±0.9, CTR: 3.7±0.7, p = 0.14). The RDQ responses indicated that low back pain was not significantly increased in the AIS group compared with the CTR group (AIS: 1.8±3.5, CTR: 1.4±3.1, p = 0.36).Conclusion. Surgery had no demonstrable adverse effects on pain or mental health in these middle-aged AIS patients 21-41 years after surgery, although the AIS patients did have significantly lower function and lower self-image than the controls.

    PMID: 22037534 [PubMed - as supplied by publisher]

    http://www.ncbi.nlm.nih.gov/pubmed/22037522


    Spine (Phila Pa 1976). 2011 Oct 27. [Epub ahead of print]
    Body Appearance and Quality of Life in Adult Patients with Adolescent Idiopathic Scoliosis Treated with a Brace or Under Observation Alone During Adolescence.
    Danielsson AJ, Hasserius R, Ohlin A, Nachemson AL.
    Source
    From the Department of Orthopedics* Sahlgrenska University Hospital, Göteborg **Malmö University Hospital, Malmö, Sweden.
    Abstract
    ABSTRACT: Study Design. The SRS brace study (JBJS-A, 1995) was comprised of patients with adolescent idiopathic scoliosis with moderate curve sizes (25-35°). Forty observed and 37 braced patients (77% of the original group) attended a follow-up a mean of 16 years after onset of maturity.Objectives. To analyze whether the subjectively evaluated present body appearance affects outcome as measured by quality of life in adult patients, previously treated by observation alone (non-braced) or with a brace during adolescence.Summary of Background Data. Few reports exist where validated outcome measures for body appearance have been used.Methods. Two quality of life questionnaires (SRS-22 and SF-36) were answered. The patient's opinion on body appearance was evaluated pictorially (i.e. sketches) using the Spinal Appearance Questionnaire, in which seven aspects of asymmetry are graded. These scores were compared with curve sizes, scoliometer measurements for grading trunk asymmetry and quality of life measures.Results. At follow-up, both groups were similar in terms of age (mean 32 years) and curve size (mean 35°). Distortion was inversely related to SRS-22 total score and satisfaction/dissatisfaction with management subscore, but not related to the SRS-22 function subscore. No difference was found between the groups in terms of trunk rotation, where the means were 10.7° and 10.8° for the non-braced and braced patients, respectively. The non-braced patients estimated that their body appearance was significantly less distorted than the braced patients (mean 12.9 and 15.0, respectively; p = 0.0028).Conclusions. Patients who experienced less body asymmetry were more satisfied with treatment and had a better quality of life. In spite of similar curve sizes and trunk rotation in both groups, the non-braced patients felt that their body appearance was less distorted than the braced patients.

    PMID: 22037522 [PubMed - as supplied by publisher]
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
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    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  9. #69
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    Quote Originally Posted by hdugger View Post
    I'm not sure if they can always tell this from the xrays, but do they think your primary curve has fused itself? You've had so little progression in it for so many years, it just seems like something is keeping it from getting bigger.

    I really hope you find something to deal with the pain - I've had short bouts of back problems, and I can't imagine those lingering on for years and staying as generally well-humored as you are. I'd be in here picking fights every day
    Thank you. I try not to be too pessimistic, it just makes life more miserable. Besides a good laugh makes you forget your troubles! ;-) As far as if it is fused, it's doubtful since the progression has only occurred in the last 5 years, ugh. I really thought I was out-of-the-woods, but the pain has been with me all along and as I get older only gets worse, which is what drove me to start getting it checked again in the first place.

  10. #70
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    Quote Originally Posted by LindaRacine View Post
    A few new studies on this issue below. I think the first one may be a bit misleading, as degenerative changes usually start when people are 45-50.

    ABSTRACT: Study Design. A case control study.Objective. To determine the clinical outcome of middle-aged patients surgically treated for adolescent idiopathic scoliosis and compare their outcomes to assessments of age- and sex-matched healthy controls.
    It's also misleading because they are comparing people with surgically-treated scoliosis to normal people as controls. They should be comparing to people with non-surgically-treated scoliosis. Of course some of those people are probably too disabled or dead from non-surgical treatment so it might be hard finding folks.

    Now there is still value in this study but the danger of publishing this work is that alternative treatment purveyors largely do NOT understand that the appropriate comparison is to other people with scoliosis and so routinely misrepresent studies like this to innocent patients as a reason not to get fusion surgery. It's risible.
    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."

  11. #71
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    Quote Originally Posted by LindaRacine View Post
    A few new studies on this issue below.
    Well, it is certainly encouraging that in the first study the surgery group and the "healthy" group had similar outcomes (escpecially with regard to pain) except for self-image. It is a little concerning that in the second group, that even though the outcomes were nearly exactly the same, that the "braced" group had lower self-image. Since both surgery and braced groups had lower self-image, I'd imagine that this is because of feeling that there is "something wrong with me". It would be nice to know if the braced group would have progressed without the brace, but that is the BIG question. If they wouldn't have, then they could have been spared the feelings of low self-image. But no one knows for sure.

    Nice find.

  12. #72
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    Quote Originally Posted by rohrer01 View Post
    But no one knows for sure.
    Even after all these years of studying the question.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  13. #73
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    Quote Originally Posted by Pooka1 View Post
    Even after all these years of studying the question.
    It may never be known, as each individual is unique. You can't take the same person and brace them and also put them in the watch and wait category. This is what makes it impossible to know. I guess the best way to find out anything is to take large groups of watch and waits and braced kids with similar curve magnitudes and types and see who ends up with the most surgery.

  14. #74
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    Quote Originally Posted by rohrer01 View Post
    It may never be known, as each individual is unique. You can't take the same person and brace them and also put them in the watch and wait category. This is what makes it impossible to know. I guess the best way to find out anything is to take large groups of watch and waits and braced kids with similar curve magnitudes and types and see who ends up with the most surgery.
    Yes I agree completely.

    But once it is admitted that the jury is out on bracing efficiency, then that automatically triggers ethical considerations because the treatment is so hard physically and mentally. Anyone who doubts this is invited to stroll down the bracing section lane on this group to read some very anguished and desperate remarks from sad baby kids. It's too much to read for me some times. They only have one childhood.
    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."

  15. #75
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    Quote Originally Posted by Kevin_Mc View Post
    One interesting thing from the Dolan paper:

    It is reasonable to expect adolescents to overwhelmingly prefer observation to bracing. Wearing a brace is not fashionable and can cause skin irritation and other inconveniences. Even when adolescents believe in the relative benefit of bracing in terms of long-term health and appearance, they often value current comfort over some future benefit.
    The author I think is opining a bit here, but does say that the data supports this general finding, i.e. pre/teen girls don't want to wear a brace and would choose observation.
    I think this is a statement of the obvious that didn't need any funding for anyone to arrive at this conclusion. Obviously no one wants to wear a brace. It is up to the orthopedists and parents to then fill in the knowledge that the child may not understand about what not wearing a brace would mean i.e. at 30-40 degrees your back will become increasingly deformed which you won't like, a potential major surgery that will cause you to receive additional, more extensive surgeries as you get older, or if you and your parents decide against surgery all that entails.

    My daughter was completely compliant with nightly bracing most likely helped by seeing the deformation of her back in the ballet mirror every day and not wanting it to become worse. I could see her occasionally turning her back to the mirror and peeking over her shoulder to see what it looked liked, especially in her growth spurts when her right scapula would end up sticking out quite a bit. She didn't like it and was motivated to keep it braced.

    I suspect she would have been compliant with full day bracing had that one orthopedist not immediately said to her: "Oh, you wouldn't want to wear a brace all day, would you?" That was the immediate end of that possibility as he is the person in authority. Support by the surgeon is a necessary requirement if any bracing program is going to be successful.

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