Cancer screening and “informed” patient decision making

What people know at the time they make decisions about having tests for risk of specific cancers is important if they are to be able to make truly informed decisions about the value of these tests. That becomes even more important when we consider the pros and cons of annual, mass, population-based cancer screening tests.

The DECISIONS survey study was designed to evaluate the extent of informed decision making in patient-provider discussions prior to screening for colorectal, breast, and prostate cancers between November 2006 and May 2007. In this survey, the participants, all of whom were English-speaking Americans of 50 years or older, were asked to compete survey modules that asked about demographic characteristics, cancer knowledge, the importance of various sources of information, and self-reported cancer screening decision-making processes. All participants had to have had a discussion about cancer screening with a health care provider within the immediately preceding 2 years.

The results of the DECISIONS study, as reported by Hoffman et al., showed the following:

  • 1,082 participants completed 1 or more of the 3 cancer modules.
  • Participants generally considered themselves to be well informed about the cancer screening tests. However, …
  • ≥ 50 percent of the participants could not correctly answer even 1 open-ended knowledge question for any given module.
  • Participants consistently overestimated risks for being diagnosed with and dying from each cancer.
  • Participants consistently overestimated the positive predictive values of PSA tests and mammography.
  • Providers were the most highly rated source of information about the tests, had usually initiated screening discussions (64-84 percent), and had often recommended screening (73-90 percent).
  • According to the participants, however,
    • Providers elicited participants’ screening preferences in only 57 percent of discussions about prostate cancer screening.
    • > 90% of the discussions addressed the potential benefits of screening.
    • Only 30 percent of the discussions addressed the potential risks of screening for prostate cancer.

The authors conclude that decisions about cancer screening (including decisions about screening for prostate cancer) reported by patients who had already discussed screening with their health care providers consistently failed to meet criteria for being “informed.” It would appear that (to date) providers have important opportunities to ensure that informed decision making occurs for cancer screening decisions, but that they are not yet willing or able to take appropriate advantage of those opportunities.

5 Responses

  1. I wonder how many times we need to explain to Sitemaster that PSA testing involves NO RISKS. The only inconvenience a man can have is having a biopsy that turns out negative. (And I am not sure anybody will object to such an outcome.) The risks that people face are the result of treatment and not of testing.

    People need to be informed of the availability active surveillance (if appropriate) and of the side effects of treatment.

  2. I wonder how many times I need to explain to Reuven that his opinion about the lack of risks associated with PSA testing is not accurate. PSA testing involves many risks, up to and including death from infections as a consequence of subsequent biopsies that may or may not be necessary. For those who are interested, the last one can be found here.

    He is, of course, completely correct in stating that patients “need to be informed of the availability active surveillance (if appropriate) and of the side effects of treatment.”

  3. I can say this much about it ~ I had no clue what a PSA test was when my first one came back near 20 when I was just 44 years old. And if anyone thinks I care that I was uninformed when I was tested, let me assure them that this test could possibly have saved my life. Considering that I was already advanced in progression, any further advance would likely have been catastrophic … I have a real kicker to add as well but if you want to read it, you’ll need to look at my update today at my website ~

  4. Sorry, Sitemaster, but I am afraid your explanation is illogical.

    If the PSA test is not meaningful, then we should not use it at all. However, all the studies indicate that it is the only way to detect prostate cancer prior to clinical symptoms.

    The usual process, that most people are aware of, is to have PSA tests and in case of a high test result to continue to explore the cause. Without a PSA test we don’t have any means to proceed to further diagnosis until clinical manifestations. Yes, biopsies are not without risk, albeit a very low one. But without biopsies we have no way at the present time to diagnose the presence of prostate cancer with high specificity.

    So we have two choices to make: (a) Have a PSA test or do nothing unless/until clinical symptoms are present. (b) If the PSA is high, have biopsy and take the small associated risk, or wait and see if clinical symptoms develop. Obviously, there is no point in taking a PSA test if one has no intent to follow up with the biopsy.

    Therefore, we can either avoid doing PSA tests or do the whole diagnosis process. If we were to choose the former, we are back in the 80s with the higher rate of advanced prostate cancer and associated suffering.

  5. Dear Reuven:

    Now you have changed the discussion. The issues of whether an individual wishes to and should have a PSA test or wishes to and should have a biopsy are not the same as your doctrinaire statement that “PSA testing involves NO RISKS.”

    This is most certainly a complex issue, and exactly how each individual wants to deal with this complex issue is his right and his entitlement … but if he starts down this road believing that there is no risk involved in taking that first step, he is misguided and inappropriately informed. And many, many people would disagree with your categorization of a prostate biopsy as having the ability to “diagnose the presence of prostate cancer with high specificity.”

    Having said that, the benefit associated with the risk of having a PSA test for a 40-year-old man with a family history of prostate cancer that led to metastasis or prostate cancer-specific mortality in two close relatives is quite different from that of an average 40-year-old “man in the street” with no known risk or known predisposition for prostate cancer.

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