The less you know, the harder the decisions about treatment …

In one more of those utterly unsurprising research findings, a study of newly diagnosed patients has shown that poor patient knowledge about the nature of prostate cancer is associated with “decisional conflict” leading to stress and anxiety given the uncertainty associated with the relative “value” of the many possible management options.

Kaplan et al. surveyed 70 patients who were enrolled in a randomized trial testing a novel, shared decision-making tool at a US Veterans Administration facility .

The baseline results of their study were as follows:

  • Average (mean) patient age was 63 years.
  • 49 percent of the patients were African American.
  • 70 percent of the patients reported an income less than $30,000 per annum.
  • Poor prostate cancer knowledge was associated with
    • Increased decisional conflict (P < 0.001)
    • Higher uncertainty (P = 0.001) about the quality of their decision
    • Lower perceived effectiveness of treatments (P = 0.003)
  • Being in a relationship was also associated with a higher level of decisional conflict (P = 0.03).

In an associated media release issued by the University of California, Los Angeles, The lead author was quoted as follows:

For prostate cancer, there is no one right answer when it comes to treatment. It comes down to the right answer for each specific patient, and that is heavily dependent on their own personal preferences.

Men in general, and specifically economically disadvantaged men, have a hard time deciding what their preferences are, how they feel about any possible complications and what the future after treatment might be like. If you don’t know anything about your disease, you’ll have a really tough time making a decision.

If you get shot in the gut, there aren’t many options. You go into the operating room to get fixed up. With prostate cancer, there are lots of options and not all are right for everybody.

None of this is going to come as any big surprise to most of the regular readers of this blog. Not only does a newly diagnosed patient often need to decide whether he really needs immediate treatment at all (especially if he has low- or very low-risk disease, or has a limited life expectancy because of other health issues). And then if it does seem evident that he really does need early intervention he has to make decisions between many different possible treatment options.

Even those of us who have been studying this type of question for years are rarely able to tell an individual, newly diagnosed patient which form or forms of management might be the most appropriate for him (although we may be able to eliminate one or two theoretical options). Clearly it becomes much more difficult for a newly diagnosed patient who has little to none of the relevant knowledge on which to base his decision.

Alas, the study by Kaplan and his colleagues is also unable to offer us any real insights into how best to inform and educate newly diagnosed patients with regard to all their options. No one is suggesting that this is going to be easy, and we are very suspicious that there is ever going to be any one type of decision aid that can help the vast majority of newly diagnosed patients. Why? Because there is a huge emotional and “non-logical” component to this decision that is driven by individual men’s perceptions of what it means to be a “man” and the risks they are willing to take to preserve their “maleness” in the face of differing levels of actual risk from a particular diagnosis.

5 Responses

  1. As the Sitemaster suggested, none of this surprises regular readers, but therein lies the issue. Considering that there are 240,000 newly diagnosed men per year in the US and prostate cancer patients become overwhelmed with the choices, along with the conflict within the urology community, it is a perfect storm.

  2. Dear Elucidated1:

    While “conflict within the urology community” is a facile term to use, the truth is less about “conflict” than it is about lack of consensus — and that lack of consensus is far from limited to the urology community: it encompasses the primary care community, the urologic oncology community, the medical oncology community, the radiation oncology community, and the patient and patient advocacy communities too. The fact is that, with the exception of a relatively small number of relatively extreme cases, we really have no idea what “the best” forms of treatment are for managing most individual cases of prostate cancer — and often, even when we almost certainly do (as we really do for men with very low-risk disease who are > 65 years of age and have a life expectancy of < 15 years), many patients (or their family members) are unwilling to go along with the form of treatment that is clearly recommended in almost all known guidelines today (for emotional reasons related to the word "cancer").

    The urology community is just one player in this particularly peculiar dance — albeit a player that could (like almost all the others) be doing a better job of seeking and stimulating a consensus that is badly needed.

  3. I have frequently been accused of stating the obvious … and I agree with your post. And I am not confident that the primary care/specialists will change much in my lifetime when it comes to prostate cancer.

    When it comes to “active surveillance” you are exactly right. But as per my personal diagnosis in 2012, I could only find one urology practice in Southern California which actually provided prostate cancer patients with a well-defined, organized, and timely active surveillance program. And we wonder why surgery continues to be the treatment de jour.

  4. Little or none? My original Dutch “doctor” gave me no information at all. He just gave me two options, announced pontifically that I could not have brachytherapy, and ordered me to choose. I did not like that at all, learned quickly, and left the country for good.

  5. I wonder how these “no sh**, Sherlock” studies get funded — unless this one was a by-product of testing a new decision aid tool?

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