7 ms·

This seems like a failure in how test results are communicated to patients. Patients should just been told that they have been "flagged for further testing", ra

This seems like a failure in how test results are communicated to patients. Patients should just been told that they have been "flagged for further testing", rather than being told they have tested positive for cancer.

inimino 6y ago
And how would that conversation go? "You've been flagged for further testing." "Why?" "Um..." "Didn't I just take a cancer screen? What was the result?" "Ah..." "Level with me, doc. Do I have cancer?" "Well, [brings out probability textbook] you see ..."
- landryraccoon 6y ago
  So I have a real issue with not just telling the patient flat out that their test results indicate a high risk of having cancer and they need to be tested again. As a society, we're just getting too used to accommodating people's ignorance about statistics and science. Where does it end? Do we have to really have to give up promising therapeutics and diagnostic tests because we're afraid people's feelings will be hurt?
  - waterhouse 6y ago
    Yeah, I really hate it when people say what sounds like, "We recommend against even trying this test because people are incapable of responding appropriately to the answer." It shouldn't even be that hard to state. "X% of people your age [+ whatever other factors they're using for a reference class] have [type of] cancer. Based on that and your test results, there's a Y% chance you have that type of cancer." Forgive me if I'm too disconnected from the average person, but is that too difficult to understand?
  - bsder 6y ago
    > So I have a real issue with not just telling the patient flat out that their test results indicate a high risk of having cancer and they need to be tested again. The problem is that "tested again" has its own complications. This is not theoretical. Part of the reason for updating the breast cancer screening guidelines is the fact that biopsies to confirm were causing more problems than the "cancers" they were finding. Medical probabilities are tricky things.
    - landryraccoon 6y ago
      You mean that the test physically caused a disorder in the patient because of a side effect, or that there was a problem in the patient’s attitude or emotional response? Because those are very different failure modes. In one case the patient’s attitude about the test is not the determining consideration. A perfectly stoic and rational patient would be just as vulnerable to the side effects as anyone else.
      - bsder 6y ago
        A biopsy causes complications up to and including the death of the patient (secondary infections, etc.). A biopsy is the next step to confirm "cancerous/non-cancerous" after a mammogram screen gives a "positive" result. The problems with the screening is that once a "positive" comes up on the screen most patients cannot stop themselves from going to the next stage even if the probabilities don't warrant it. The only medical "solution" was to decrease the frequency of screenings and raise the age at which first screening should occur.
        waterhouse 6y ago
        Hmm, is that a situation where there is no appropriate action to take, regardless of the outcome of the screen? If that were the case, then there would be no point in doing the screen even if all actors were fully rational. But I'm guessing it's more like, the correct action is to wait N months and do a followup test. Does it not work to say "If we take a biopsy, assuming normal treatment plans and outcomes for someone in your reference class, there's a 0.1% chance the biopsy kills you, and a 0.05% chance it saves you from cancer compared to the plan I'm recommending", or whatever the truth is? (If the next possible step is a biopsy, under what circumstances does the calculus imply one should do the biopsy? When the screen results look sufficiently bad? Then maybe they shouldn't be presented as a binary "positive"/"negative".)
        bsder 6y ago
        > Does it not work to say No. It does not. A diagnosis of "you might have cancer but the probability is low and we should just watch it" is not something that most people can psychologically take. For more than half of the population, that kind of understanding is simply untenable. And, even for people I knew who could understand it, several of them had so much anxiety that it drove their blood pressure up and it was better to just go get the biopsy so they didn't wind up with a stroke or heart attack. In addition, "mortality probabilities" are a lot harder to psychologically absorb when you are 50 than when you are 20. By the time you are 50, you've probably had more than a few of your friends and family in a coffin from a "low probability event". Emotions are difficult. At some point, I will get diagnosed with a positive prostate screen (practically all men who live long enough do) that will almost certainly be "We should keep an eye on it." I hope I can weather it with the aplomb of my engineering background. We shall see.
- wolfgang42 6y ago
  > "Didn't I just take a cancer screen? What was the result?" “The result was ‘probably not,’ but the other option is ‘almost certainly not’ so we’d like to do more tests to make sure.” (If the patient presses for more information, you don’t need to pull out the textbook yet; a simple analogy to explain why a cancer screen needs more tests might be by analogy to a rock screen, which sometimes catches clumps of dirt that need to be prodded a bit more to determine that they’re not actually stone.) The important bit is to present it as routine and not yet a cause for concern, to avoid causing excessive alarm.

inimino 6y ago

And how would that conversation go? "You've been flagged for further testing." "Why?" "Um..." "Didn't I just take a cancer screen? What was the result?" "Ah..." "Level with me, doc. Do I have cancer?" "Well, [brings out probability textbook] you see ..."

landryraccoon 6y ago
So I have a real issue with not just telling the patient flat out that their test results indicate a high risk of having cancer and they need to be tested again. As a society, we're just getting too used to accommodating people's ignorance about statistics and science. Where does it end? Do we have to really have to give up promising therapeutics and diagnostic tests because we're afraid people's feelings will be hurt?
- waterhouse 6y ago
  Yeah, I really hate it when people say what sounds like, "We recommend against even trying this test because people are incapable of responding appropriately to the answer." It shouldn't even be that hard to state. "X% of people your age [+ whatever other factors they're using for a reference class] have [type of] cancer. Based on that and your test results, there's a Y% chance you have that type of cancer." Forgive me if I'm too disconnected from the average person, but is that too difficult to understand?
- bsder 6y ago
  > So I have a real issue with not just telling the patient flat out that their test results indicate a high risk of having cancer and they need to be tested again. The problem is that "tested again" has its own complications. This is not theoretical. Part of the reason for updating the breast cancer screening guidelines is the fact that biopsies to confirm were causing more problems than the "cancers" they were finding. Medical probabilities are tricky things.
  - landryraccoon 6y ago
    You mean that the test physically caused a disorder in the patient because of a side effect, or that there was a problem in the patient’s attitude or emotional response? Because those are very different failure modes. In one case the patient’s attitude about the test is not the determining consideration. A perfectly stoic and rational patient would be just as vulnerable to the side effects as anyone else.
    - bsder 6y ago
      A biopsy causes complications up to and including the death of the patient (secondary infections, etc.). A biopsy is the next step to confirm "cancerous/non-cancerous" after a mammogram screen gives a "positive" result. The problems with the screening is that once a "positive" comes up on the screen most patients cannot stop themselves from going to the next stage even if the probabilities don't warrant it. The only medical "solution" was to decrease the frequency of screenings and raise the age at which first screening should occur.
      - waterhouse 6y ago
        Hmm, is that a situation where there is no appropriate action to take, regardless of the outcome of the screen? If that were the case, then there would be no point in doing the screen even if all actors were fully rational. But I'm guessing it's more like, the correct action is to wait N months and do a followup test. Does it not work to say "If we take a biopsy, assuming normal treatment plans and outcomes for someone in your reference class, there's a 0.1% chance the biopsy kills you, and a 0.05% chance it saves you from cancer compared to the plan I'm recommending", or whatever the truth is? (If the next possible step is a biopsy, under what circumstances does the calculus imply one should do the biopsy? When the screen results look sufficiently bad? Then maybe they shouldn't be presented as a binary "positive"/"negative".)
        bsder 6y ago
        > Does it not work to say No. It does not. A diagnosis of "you might have cancer but the probability is low and we should just watch it" is not something that most people can psychologically take. For more than half of the population, that kind of understanding is simply untenable. And, even for people I knew who could understand it, several of them had so much anxiety that it drove their blood pressure up and it was better to just go get the biopsy so they didn't wind up with a stroke or heart attack. In addition, "mortality probabilities" are a lot harder to psychologically absorb when you are 50 than when you are 20. By the time you are 50, you've probably had more than a few of your friends and family in a coffin from a "low probability event". Emotions are difficult. At some point, I will get diagnosed with a positive prostate screen (practically all men who live long enough do) that will almost certainly be "We should keep an eye on it." I hope I can weather it with the aplomb of my engineering background. We shall see.
wolfgang42 6y ago
> "Didn't I just take a cancer screen? What was the result?" “The result was ‘probably not,’ but the other option is ‘almost certainly not’ so we’d like to do more tests to make sure.” (If the patient presses for more information, you don’t need to pull out the textbook yet; a simple analogy to explain why a cancer screen needs more tests might be by analogy to a rock screen, which sometimes catches clumps of dirt that need to be prodded a bit more to determine that they’re not actually stone.) The important bit is to present it as routine and not yet a cause for concern, to avoid causing excessive alarm.