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Thread: How patients overestimate the predicted success of surgery

  1. #1
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    How patients overestimate the predicted success of surgery

    This is not a paper about scoliosis, but more generally about spinal surgery and what doctors think they're saying vs. what patients believe the outcome of their surgery will be.

    http://journals.lww.com/spinejournal...rative.11.aspx

    Here's a snippet from the results:

    "The patients consistently had higher expectations than the surgeons, especially for back or neck pain and function (work, household activities, and sports); weighted κ values for agreement were low, ranging from 0.097 to 0.222."

  2. #2
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    Interestingly, here's the complimentary study to the previous one. When asked, after surgery, about the severity of events following surgery, (such as dural tear, blood transfusion, etc) doctors rated the events as significantly less serious then patients rating the same event.

    http://journals.lww.com/spinejournal...ions_of.5.aspx

    Here's the conclusion:

    "Conclusion. There was substantial variation in how both surgeons and patients perceived impacts of various adverse events after spine surgery. Patients generally perceived the impact of adverse events to be greater than surgeons. Patient-centered descriptions of adverse events would provide a more complete description of surgical outcomes."

    One of the authors is our doctor, so I'm sure this is correct

  3. #3
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    This is something about which I spend a good percentage of my time contemplating. When adult scoliosis surgery patients are questioned about their outcomes, they fairly routinely say that they are happy with their outcome. Nonetheless, those same patients are often a little unhappy with one or more small aspects of their experience. While most patients get at least some improvement in their pain, they often have some lingering complication (weakness, swelling, new pain, etc.) I've experienced this myself. I'm just about completely delighted with my outcome. I have no lower back pain, and no radicular leg pain. That SHOULD be enough. Yet, I can't help but wish that I hadn't been left with lymphedema, which I'll probably have for the rest of my life. It's not a big deal, but it is something. With that said, I would still make exactly the same decision to have the surgery.

    I believe the results of both of those papers, as it's something I'm exposed to every day. It would be interesting, however, to ask one additional question of every patient... "are you better off now than you were before surgery". I believe the vast majority of patients would emphatically say yes. We see this in outcome scores, especially from the SRS questionnaire, where the questions are broken up into categories like pain, function, appearance, etc. Surgery patients routinely have better scores in all domains after surgery. But, only a small percentage of people have perfect outcome scores. And, I suspect that if we could actually question patients that have perfect scores, we'd find there was at least one little thing that would bother most patients.

    At work, we're always tempted to say it's all about the expectations. But, I'm not sure that that's 100% correct. I really think it's just human nature. We're not unsatisfied. It's that we're never perfect.. That's potentially something we should all have hammered home to us. Very few people with scoliosis will ever be perfect, regardless of their treatment choices. Perfection is a totally unrealistic expectation.
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Dilbert
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    I agree with Linda. Normal is off the table. It's about cutting losses. The comparison is the person with surgery and without surgery. If my kids didn't get a perfect outcome then what they have is indistinguishable from that. They are alive and have a life because of surgery.

    Articles like this silently address a "perfect" world where the comparison is normal versus surgery. That is off the table and while it's interesting, it is ultimately a "Look at the Wookie" thing.
    Sharon, mother of identical twin girls with scoliosis

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    Hi Linda -- I also agree.

    I think one of the hardest things for scoliosis patients (especially older adults) to accept is the fact that with or without surgery, their bodies will never be normal. I tend to think of my surgical outcome not as a cure, but as management of a chronic condition that may require further treatment at some point in the future (although I fervently hope not!!!). Nearly six years after my own surgery, I'm generally happy with my outcome but if I had to do it over again, I'd opt for an all-posterior approach since I still have a fair amount of discomfort from the thoracoplasty. Also, since I'm a professional singer, I was extremely disappointed to lose some lung capacity after the thoracoplasty -- I still sing and have learned to compensate but I'm nowhere near as good as I used to be and I really wish this was something Dr. Boachie had told me going into the surgery.

    That being said, I suspect that I'd be very deformed and in a lot of pain had I not had the surgery, and I got a fantastic correction. I've shrunk a little from the initial height boost but it seems to me that things are holding steady. I agree that it's really important for people to realize they'll never be perfect -- and I think surgeons should work with patients to give them realistic expectations.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

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    Is some of the issue the doctor's presentation, and not just the patients expectations of perfection? My experience in (non-scoliosis) surgeries is that while doctors cover the expected outcomes fairly, they don't tend to dwell on the negative. I think that's just a human response - you see someone in pain and you want to let them know that you can do something to help. You're not going to give them false expectations, but you're also not going to really dwell of all of the lingering/negative outcomes that you've seen. So, you might well say "we expect this procedure to improve your pain, but there's no promise that it will relieve it altogether." But, a more detailed setting of expectations would really try to give a clear picture of what might be better and what might be worse - "Most of the patients I've treated have seen a reduction in pain, but they almost all go on to have some lingering problems - the most common are x, y, and z. I probably see x% of people who have pains in their upper back after the procedure and x% that have . . . " and so on. Basically, they'd come out of the meeting knowing what those of us in a forum full of adult surgery patients know - surgery will likely make it better, but it won't make you forget that you have back problems.

    In some cases, the first explanation is completely reasonable. When my son had jaw surgery, the doctor sort of rushed through the possible negative outcomes. But, jaw surgery really has very few negative outcomes - if you visit a jaw surgery forum, it's basically people talking about the first few weeks of their recuperation, and then a ton of happy before and after pictures. A handful of long term problems, but just a handful, and maybe one person a year who talks about needing a revision. But, scoliosis forums are full of people who've had surgery and need revisions or have continued or new pain. Like you, I've rarely seen anyone who regrets having the surgery, but clearly the expected outcome is not that you'll have the surgery and be just like someone without scoliosis. What Singer said is right on target - it's a chronic condition and you'll spend you life managing it and dealing with it.

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    Quote Originally Posted by hdugger View Post
    But, jaw surgery really has very few negative outcomes - if you visit a jaw surgery forum, it's basically people talking about the first few weeks of their recuperation, and then a ton of happy before and after pictures. A handful of long term problems, but just a handful, and maybe one person a year who talks about needing a revision.
    This is a good description of teenagers and young adults who get thoracic fusions as far as anyone knows to my knowledge. Take Bendy Bill's recent post or my daughters or anyone in that category. The revisions seem to be associated with TL and L and High T curves and not fusing the entire structural curve or not adequately de-rotating the unfused curve or whatever. You tend to conflate these issues and lump them inappropriately when there is evidence to split.

    To the extent most fusions are T fusions, in both kids and adults, the issue of revision is probably irrelevant for most of them. And as Asher said, these are the curves where nobody denies surgery is the right solution. Even the H-rod patients with only T curves generally do well. It is likely the new instrumentation will be even better.

    But even if it isn't, surgery allows these kids to have high school, prom, college, graduate school, careers, marriage, etc. etc. etc., some or all of which would NOT happen if they didn't have the surgery considering the disfigurement and health issues. T fusions are a clear win with almost no downside as far as anyone knows.

    Hopefully something can be done for other curve types that is better than fusion. But until then, the comparison is STILL that patient with their back with and without fusion. Normal is off the table. The fact that these other fusions still go on and many/most people are glad they did it and would do it again explains why surgery continues. No need to parse that further... the thing speaks for itself.
    Last edited by Pooka1; 05-21-2013 at 10:18 AM.
    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."

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    are you sure most ADULT fusions are thoracic....??????????????
    what about all those adults with lower back problems...??
    quite common with age...and degenerated discs...
    i know few adults with upper back problems, but lots with lower back
    problems...with and without scoli...????????????

    jess

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    This may not be the norm, but prior to my son’s surgery, we were given all possible scenarios including a good deal of focus on the worst case scenarios - longest recovery period, every possible complication (including those that had not yet occurred in any patient), less than desirable outcomes, etc.

    I think there were several reasons for this. First, we were talking about a relatively young child. Second, I think the surgeon was more of a “glass half empty” sort of thinker vs. “glass half full” (someone later told me that). Third, since VBS was relatively new at the time, I think that everyone went out of their way to be sure not to sugarcoat anything.

    In fact, it was only after talking to a few parents of kids who had undergone the same surgery that I began to feel more at ease about going through with it.

    As I said, this may very well not be the norm, although IMHO it should be. Better to be a little nervous knowing all the things that can (but hopefully won’t) happen than to have any surprises.
    mariaf305@yahoo.com
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    Quote Originally Posted by jrnyc View Post
    are you sure most ADULT fusions are thoracic....??????????????
    what about all those adults with lower back problems...??
    quite common with age...and degenerated discs...
    i know few adults with upper back problems, but lots with lower back
    problems...with and without scoli...????????????

    jess
    I saw a Lenke article a while back showing that T fusions are still the most common scoliosis fusion in adults. I think the assumption is those are AIS that were untreated. There seem to be more longer fusions in adults than kids but I think T fusions still dominate in adults with AIS because they are so dominant in kids and all adults are former kids. :-)

    I'll try to find the paper.
    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."

  11. #11
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    Quote Originally Posted by mariaf View Post
    This may not be the norm, but prior to my son’s surgery, we were given all possible scenarios including a good deal of focus on the worst case scenarios
    I'm not surprised to hear that Betz, et al did a great job. They ought to clone that guy

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    Quote Originally Posted by Pooka1 View Post
    I saw a Lenke article a while back showing that T fusions are still the most common scoliosis fusion in adults. I think the assumption is those are AIS that were untreated. There seem to be more longer fusions in adults than kids but I think T fusions still dominate in adults with AIS because they are so dominant in kids and all adults are former kids. :-)

    I'll try to find the paper.
    I'm surprised about the seeming incidence of thoracic curves. The vast majority of the adult curves at UCSF are lumbar curves. The next largest classification is thoracolumbar. We do know, however, that the patient population at Wash U is about 20 degrees younger on average, than UCSF. I would say that it's rare that adults with thoracic only curves present for surgery.
    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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    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
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    Quote Originally Posted by LindaRacine View Post
    The vast majority of the adult curves at UCSF are lumbar curves.
    Do you mean lumbar only? Or a mixture of lumbar and thoracic/lumbar double curves?

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    Quote Originally Posted by hdugger View Post
    Is some of the issue the doctor's presentation, and not just the patients expectations of perfection? My experience in (non-scoliosis) surgeries is that while doctors cover the expected outcomes fairly, they don't tend to dwell on the negative. I think that's just a human response - you see someone in pain and you want to let them know that you can do something to help. You're not going to give them false expectations, but you're also not going to really dwell of all of the lingering/negative outcomes that you've seen. So, you might well say "we expect this procedure to improve your pain, but there's no promise that it will relieve it altogether." But, a more detailed setting of expectations would really try to give a clear picture of what might be better and what might be worse - "Most of the patients I've treated have seen a reduction in pain, but they almost all go on to have some lingering problems - the most common are x, y, and z. I probably see x% of people who have pains in their upper back after the procedure and x% that have . . . " and so on. Basically, they'd come out of the meeting knowing what those of us in a forum full of adult surgery patients know - surgery will likely make it better, but it won't make you forget that you have back problems.

    In some cases, the first explanation is completely reasonable. When my son had jaw surgery, the doctor sort of rushed through the possible negative outcomes. But, jaw surgery really has very few negative outcomes - if you visit a jaw surgery forum, it's basically people talking about the first few weeks of their recuperation, and then a ton of happy before and after pictures. A handful of long term problems, but just a handful, and maybe one person a year who talks about needing a revision. But, scoliosis forums are full of people who've had surgery and need revisions or have continued or new pain. Like you, I've rarely seen anyone who regrets having the surgery, but clearly the expected outcome is not that you'll have the surgery and be just like someone without scoliosis. What Singer said is right on target - it's a chronic condition and you'll spend you life managing it and dealing with it.
    The truth is that the list of potential complications is so long that it's totally unrealistic to cover it all. The other truth is that the surgeons probably only care about the complications that are more common and more significant. I suspect that if surgeons had to mention and explain the top 100 complications, the discussion would take forever, and I think many patients would run away. They would also need to mention the risks of not having treatment, but I doubt patients would stick around long enough to hear that. In recent years, institutions like Wash U, HSS, and UCSF have published papers on complications in adult scoliosis surgery, but those publications still only cover the major complications.

    I actually had an interest in compiling a list of the relatively rare complications. Last year, I asked the members of a flatback forum to tell me about their surgical complications that weren't in the following list:

    > Early Infection
    > Pulmonary embolus
    > Epidural hematoma
    > Extreme blood loss
    > ileus
    > Trochanteric bursitis
    > Neurologic damage - minor (short term)
    > Neurologic damage - major (short term)
    > Significant neurologic damage (long term)
    > Minor neurologic damage (long term)
    > Death
    > Lymphedema
    > Leg swelling
    > DVT
    > Heart issues
    > Pneumonia
    > Blindness
    > UTI
    > Dural tear
    > Later Infection requiring rehospitalization
    > Painful or prominent implants
    > Coronal or sagittal imbalance
    > Adjacent segment disease
    > Lymphedema
    > Blindness
    > Incisional hernia
    > Increased pain
    > Pseudarthrosis/failure to fuse, broken implants
    > Numbness
    > Pancreatitis
    > Gall bladder disease

    There are hundreds of members on that forum, but no one could come up with any new diagnoses. Members were able to list symptoms, but not actual diagnoses for some reason.
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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    Quote Originally Posted by hdugger View Post
    Do you mean lumbar only? Or a mixture of lumbar and thoracic/lumbar double curves?
    See the next sentence of my post (thoracolumbar).
    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
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
    ---------------------------------------------------------------------------------------------------------------------------------------------------
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