How important is the skill of the Brace Fitter?

[concerned dad]

I haven’t had much to add lately but a recent post by mamandcrm on another thread got me thinking about something.

When it comes to bracing, just how important is it to get our kids fitted by an expert. There seems to be some evidence that results vary between the fitters (whether they be orthotists, orthopods, or whatever). Mamandcrm’s post about “Luke” got me thinking about something I read in the Danielson paper (the 15 year follow-up paper to the 1995 SRS Nachemson bracing study looking at just the Swedish patients). Danielson says (as always, emphasis added is mine):

During the original study, it was found that the observation treatment strategy resulted in subsequent brace treatment or surgery occurring in 19 of 65 cases (29%), but not a single case with progression was observed among the originally brace-treated patients. The fact that the late Stig Willner supervised the brace treatment in Malmo¨ might be a possible weakness of that study. He was very committed to the bracing of scoliosis patients and, by following the rules for performing brace treatment meticulously, he was able to obtain extraordinarily good results.26–28 It might therefore be true to say that the comparisons made between the 2 treatment strategies in this study cannot always be direct applied to every scoliosis center.

However, brace treatment performed at the other center in the study (Goteborg), which was performed correctly but probably somewhat less meticulously, has also been shown to alter curve progression, which means that bracing had the intended effect on curve magnitude. The patients braced after progression in this study had 36° before bracing and 32° after completed treatment. Similar results were obtained in another series of patients who were brace treated during the early 1970s in Goteborg and had a curve size of 33° at the start and 30° after completed brace treatment.29 We therefore think that the basic findings, that well-performed brace treatment can stop curve progression and that observation will allow some curves to progress until treatment is needed, are still valid.

Many of us travel to Montreal to have our kids fitted with the SpineCor by the inventors of the brace; Drs Rivard and Coillard. Some of the criticism of the SpineCor is countered by saying the other brace fitters lacked adequate skills, knowledge and/or experience. For example, Wong in Taiwan, Weiss in Europe, and even some of the orthopods here in the US who tried the SpineCor and apparently didn’t get very good results. The Boston Brace is so common in the US. Is it used so much here because it is ‘easier’ to fit? Are there other Boston Bracing experts? Apparently Mamandcrm’s Luke does a good job with the Rigo-Cheneau as Drs Rivard and Coillard have great results with the SpineCor. And the late Stig Willner sounds like he was a pretty committed individual (He used the Boston Brace in the study).

There is a business literally at the end of my street. Their name is “XYZ Limb and Brace” (with XYZ being the name of my town). We travel hundreds of miles to Montreal instead of 200 yards to the end of my street. I guess that obviously I think there is a difference.

I just thought I would throw this out there for comment.

[mamandcrm]

If we moved to California tomorrow, I would fly my daughter back here to Virginia for her brace fittings and adjustments, that is the level of confidence that I have that we are getting the best brace we can, and how important I think it is to end results. If she wore Spinecor, I would take her to Montreal. Her very well-respected doctor is here to read the x-rays and perform the surgery if that becomes necessary but right now her most important medical care provider is her orthotist. I do not know whether we will get the results we want but I do know that the person fitting my daughter is very committed to her success and the in-brace corrections she gets are well beyond the norm. Right now, I can't do better than that. At our last visit, I remember the orthotist telling me that some of his patients view him as a sort of pharmacist, just filling a prescription. The way I look at it, IF this brace is going to work (and I am talking final correction, not just holding), it's only going to work if it is being fitted by someone who is an expert in his/her field.

[Pooka1]

Our orthotist claims only two of his few hundred patients over the years went on to need surgery. That would stand in excellent comparison with both Spinecor and this Luke guy. In fact it would blow both of them out of the water.

Do I think our orthotist's claim is accurate? No.

Do I think the claims of other orthotists are accurate? No.

If they were, we would know it by now. But the world is still waiting.

[mamandcrm]

I don't think it's necessarily true that we would all know of pockets of success where they exist, or that because you haven't heard of them then there are none. I didn't take our orthotist at his word. I talked to his other patients. I would never have know he existed or these other patients with remarkable success existed if we hadn't happened to have moved here, and happen to live a half-hour away. Do all his patients have this success? No. Do I view his success with other patients as a guarantee my daughter will have the same success? No. Do I view it as hopeful? Yes. Would I rather have my daughter seen by someone who can show me success rather than someone who can't? Yes. Does the fact that your think your orthotist lied to you make me think that everyone else is lying? No.

[Pooka1]

Do I think anyone is lying? No.

Do I think they are mistaken? Yes.

[mamandcrm]

So, if my orthotist tells me he has seen x% correction in some of his patients with x type of curve, and I call those patients and they tell me their kids have gotten that correction, where am I mistaken? No one is promising me she will get that correction or if she gets it that it will last. Nor do I believe that those things WILL happen, just that it's a possibility that has been proved to my satisfaction.

[mamandcrm]

...or maybe I should say that's worth trying and then evaluating after some months.

[Pooka1]

Look you may be right about this guy. There is nothing in hand that rules out that this guy has hit upon a particularly successful approach within the Rigo-Cheneau brace approach.

I'm just saying there is a phenomenon that people tend to count the hits and disregard the misses. The entirety of science it is avoid that and other errors. This word of mouth stuff is virtually useless when we know most of the stuff that gets through peer review and is published is STILL false.

What my experience has established for me is that there is no reason to think orthotists have a clue as to their overall success rate. For example, I will NOT be calling him to tell him his brace failed my daughter. Moreoever, I seriously doubt our surgeon goes over the outcome of every braced patient with the orthotist.

So how is the orthotist going to count my daughter? Don't you think he's going to call that a hit? Do all people who go on to have surgery ring Luke up to tell him? Maybe they do and I stand corrected!

[mamandcrm]

My point is that I am not making my decisions based on general claims or on facts I cannot verify. I have more than one choice. In the absence of a clearly correct choice, because there simply is not one, I have to choose based on the actual information I have, limited as it may be. That includes globally available information, and information that I have personally collected. The global information I have is brace studies. They tell me that the efficacy of bracing is uncertain. So I don't find them helpful. But I have to choose something (even if the choice is to do nothing). So I choose the option that seems to offer the best possibility for her based on the fact that she shares characteristics with a small pool of patients who have had success. And I also weigh in the fact that our doctor (a pediatric orthopedic surgeon who I judge to be pretty conservative when it comes to treatment options) seems to be cautiously impressed with the results she is seeing in many patients she sends to this practice. So I am placing a bet using the information that I have.

But getting back to the original question, do you not think that a more skilled and/or dedicated orthotist or brace fitter may get better results from his/her patients than one who is merely filling a prescription and punching the clock?

[Pooka1]

My point is that I am not making my decisions based on general claims or on facts I cannot verify. I have more than one choice. In the absence of a clearly correct choice, because there simply is not one, I have to choose based on the actual information I have, limited as it may be. That includes globally available information, and information that I have personally collected. The global information I have is brace studies. They tell me that the efficacy of bracing is uncertain. So I don't find them helpful. But I have to choose something (even if the choice is to do nothing). So I choose the option that seems to offer the best possibility for her based on the fact that she shares characteristics with a small pool of patients who have had success. And I also weigh in the fact that our doctor (a pediatric orthopedic surgeon who I judge to be pretty conservative when it comes to treatment options) seems to be cautiously impressed with the results she is seeing in many patients she sends to this practice. So I am placing a bet using the information that I have.

This sounds like a rational thought process.

But getting back to the original question, do you not think that a more skilled and/or dedicated orthotist or brace fitter may get better results from his/her patients than one who is merely filling a prescription and punching the clock?

Yes I agree they may get better results assuming there is a way for external bracing to affect the course of most scoliosis cases. I don't think this even this general claim has been established, perhaps due in some part to the lack of large cadres of extremely skilled orthotists. That could be the case. Who knows. All we can do is keep an open mind and try to avoid errors in thought and logic.

It's a kick in the teeth when a kid wears a brace for years and still has to have surgery. I hope someone ponies up evidence at least one of these external braces works, especially for the JIS cases. Or, failing that, that the stapling or growth rods can be counted on to avoid early fusion surgery.

[mamandcrm]

Well, I couldn't agree with you more on the whole "kick in the teeth" thing. The way I look at it, my daughter's job right now is to wear this brace and mine is to figure out a way to get her out of it.

[Pooka1]

The way I look at it, my daughter's job right now is to wear this brace and mine is to figure out a way to get her out of it.

Very clever!

[Karen Ocker]

My questions about bracing

Many forum participants wore their brace faithfully -some for 6 years---and once the brace was off the curves, some slowly/some rapidly, progressed to surgical magnitude. This leads me to follow with interest the genetic studies identifying the gene marking likeliness of progression. It makes me wonder that if a child carries the progressive gene all that bracing is for naught. If that child fails to progress beyond, say, 20 degrees, she/he may never progress but reaching 30 deg seems to make me suspect likelihood of progression.

I was taken care of by the famous Dr. Cobb of Cobb measurement fame. When we first consulted him my curves were not that large and we asked about bracing. He said bracing didn't work and we just needed to monitor my progression until skeletal maturity. This was in the 1950s when surgery was a last resort for horrible curves and bracing/exercises were the only treatments used. I ended up with the horrible curves.

How about a survey on adult members who wore their braces faithfully and ended up with surgery?

[tonibunny]

Karen, do you think that if you had been offered a brace, your curve would have stayed relatively moderate rather than progressing to 100 degrees? Or are you happy that you didn't wear one?

[pat]

This leads me to follow with interest the genetic studies identifying the gene marking likeliness of progression. It makes me wonder that if a child carries the progressive gene all that bracing is for naught. If that child fails to progress beyond, say, 20 degrees, she/he may never progress but reaching 30 deg seems to make me suspect likelihood of progression.

It's interesting alright, it's happening, there's a, yet to be marketed test, that will show the genetic markers that supposedly will show whether your child will progress regardless of bracing . . it'll be really interesting to see what it does to the whole "bracing industry." And how fast it gets out on the market; money talks.