Decision aids and decision-making in prostate cancer risk

Your sitemaster has long believed that, while electronic and other decision aids can be helpful in providing men with information and education about prostate cancer, their value in helping them to make the best decisions is less clear. A newly published report by Stamm et al. in the Canadian Journal of Urology appears to support your sitemaster’s concerns.

The study carried out by Stamm et al. was a randomized, prospective study in which the authors tested three different processes by which patients were helped to come to a decision about whether they wanted to have a PSA test to evaluate their risk for prostate cancer. The three processes were:

  • “Usual care”, i.e., a straightforward discussion with a clinician (UA) with no use of a decision aid
  • Use of a decision aid, but no discussion with a clinician (DA)
  • Use of a decision aid plus “shared decision making” with a clinician (DA + SDM)

It is also important to know that the patients were stratified into two groups based on whether they had a long-term relationship of > 3 years (LTPR) or only a short-term (STPR) relationship of < 3 years with the provider in question.

Here is what Stamm et al. report as the core results of their study:

  • 329 patients were randomized to UA, DA, or DA + SDM (i.e., about 110 patients to each method)
  • The men randomized to the DA + SDM arm were more likely to report discussing the implications of screening
    • DA + SDM — 33 percent
    • UC — 22 percent
    • DA — 16 percent
  • The men who used the decision aid (in the DA and in the DA + SDM groups) correctly answered more prostate cancer screening-related knowledge questions
    • DA and DA + SDM — 5.03
    • UC — 4.46
  • Men in the DA arm were less likely to report that they felt encouraged to discuss all health concerns
    • DA + SDM, 87 percent
    • UC — 78 percent
    • DA — 72 percent
  • STPR patients in the DA arm were much more likely to undergo PSA-based prostate cancer screening (41 percent) than those in the UC arm (8 percent).
  • LTPR patients did not show this difference in effect on screening rates.

Stamm et al. conclude that:

Providing patients [with a decision aid] without a personal interaction [with a knowledgeable clinician] resulted in a greater chance of undergoing PSA-based screening without improving knowledge about screening or understanding of the consequences of this decision. This effect was exacerbated by a shorter term provider relationship. With complex issues such as the decision to pursue PSA-based prostate cancer screening, tools cannot substitute for direct interaction with a trusted provider.

In assessing the results of this study, it is important for experienced patients and advocates to remember that the vast majority of men, when faced with their first opportunity to consider whether they should have a screening PSA test, have almost no knowledge about the potential implications of such a test at all. Nor have they usually accumulated the information that would guide them about the subtle implications involved in the results of such testing.  And this is one of the inherent problems associated with shared decision-making too.

Shared decision-making about having a PSA test to assess individual risk for prostate cancer is now encouraged by the American Urological Association and by the Choosing Wisely initiative; it is also encouraged by the new draft guidance issued by the US Preventive Services Task Force (which is still to be formally finalized). However, the process of education and SDM takes time, and is therefore challenging for clinicians, most of whom (and particularly primary care providers) are under constant time constraints and have constant competing patient priorities.

Your sitemaster is in complete agreement with the conclusions drawn by Stamm et al. — that a decision aid without a thorough discussion with a knowledgeable clinician — is probably far from helpful when it comes to the decision about whether or not a particular man should have a PSA test to assess his risk for prostate cancer. We also understand why the length of the relationship between the patient and the clinician may be highly influential to the results of this study.

The decision whether or not to have a PSA test for risk of prostate cancer is closely related to what one might want to do when you get the results of that PSA test. And what one might do if the results of that PSA test were even slightly elevated is becoming more complex rather than less complex.

While your sitemaster is all in favor of the idea that those men who want to have PSA tests to assess their risk for prostate cancer (for whatever reason) should be able to and encouraged to do this (as and when it is appropriate), he is also of the opinion that, as a society, we still utterly fail to initiate education for men about risk for prostate cancer until it is far too late — with the consequence that all too many men rush into getting PSA tests with almost no real understanding of the implications or the potential consequences. This is a serious public health issue that needs to be better addressed.

3 Responses

  1. It’s difficult to perform a digital exam on many men who have blocked the entryway with their own heads.

  2. My Version of the Ideal Shared Decision Making

    Thanks as always for bringing us research that helps us think about important issues for prostate cancer.

    Two things stand out for me, both of which I am convinced are facts, in visualizing how men make a decision whether to be screened for prostate cancer:

    (1) The vast majority of patients have a very low knowledge base for making the decision, which is not surprising unless they have a special reason to be alert to the threat from this disease, such as a challenging case experienced by a close relative or friend;

    (2) Much of the purported “evidence based” “knowledge” about the pros and cons of screening, which has been used by doctors in shared decision-making and in decision aids, has been of poor quality.

    Therefore, I am convinced that a great many patients who have engaged in shared decision-making or who have used decision aids based on poor quality evidence have been misled.

    Point (1) will be obvious to those of us who have interacted with men and women about prostate cancer screening. Point (2) is based on the poor quality of past recommendations and their basis by the US Preventive Services Task Group (USPSTF). In brief, that group gave unwarranted credit to the PLCO trial results regarding the benefits and risks of screening, and the USPSTF failed to recognize that the European trial, known as the ERSPC, was grossly premature when initially reported and relied upon by the USPSTF, especially regarding an extremely short follow-up at that time since diagnosis of prostate cancer for those who were diagnosed. Some of us have been amazed at how uncritically such flawed recommendations were accepted by so many in the medical community.

    So what would be a better way? Based on what I would have liked to have heard from my doctor about 20 years ago, some years before my own diagnosis of a life-threatening case, and based on what I would like my sons to know, I’m visualizing something like this.

    The doctor states that he would like to do a PSA test (and perhaps a DRE) to detect whether anything is a medical issue with the prostate, especially prostate cancer, but also undesirable benign growth and infection. He notes that because the test was once controversial, it deserves a couple of minutes of attention. He then adds that an elevated PSA would warrant follow-up, which could be more PSA testing in several months, but which could also be an imaging test known as a multiparametric MRI, or a biopsy, which has some but minimal risk and is routine. Next he says that if prostate cancer is detected of the mild type, which often happens and is frequently not a threat to a man throughout his life, that what is called “active surveillance” — essentially active monitoring but no treatment — is the best course of action and very well supported by research. He adds that if the cancer is more aggressive, the odds are very high that it can be cured when caught early enough. But that would involve treatment, and treatment often has some side effects. On the other hand, he adds, aggressive prostate cancer caught late, usually when the patient has not been screened, is not a quick or easy death like a sudden heart attack but rather typically involves a very burdensome, painful, disabling, and expensive process that is prolonged over a number of years, which is hard on families, with about 30,000 men in the US dying from the disease, after suffering through that process, each year. The doctor concludes that he gets screened himself and recommends it, unless a patient has a short life expectancy, because these days we know how to avoid unnecessary treatment, and the side effects of treatment that is necessary are far more desirable than an extended course of suffering with the very real prospect of death. He then asks for the patient’s agreement to do the PSA test.

    Note that he does not make a big deal about this, nor does he burden the patient with details that, if soundly presented with adequate risk detail about odds and mildness/severity, the patient is ill equipped to mentally process and assess. It would take about two and a half minutes to present this, which is short enough to be practical in a primary care doctor’s consultation. Subsequent screenings could be done with a mention that it is now time to do the PSA screening again “based on what we have discussed before.”

    Vickers and Carllson did a very nice job of illustrating the impracticality and undesirability of the kind of shared decision-making envisioned by the US Preventive Services Task Force in the past. The key discussion starts at about the 8 minute point in this 9.5 minute piece; it’s just above the conclusion. Access is free but requires logging into a free Medscape account.

    (Loved your comment, Howard!)

  3. Dear Jim:

    There are two rather more than small problems with your “ideal” screening discussion.

    (1) Something like 34% of all physicians in the USA today are female … so they certainly aren’t going to be able to state that they get screened with a PSA test for risk of prostate cancer themselves!

    (2) More than half of all the physicians in the USA today are aged either between 21 and 49 or >70 years of age. It is highly likely that only a small percentage of those physicians would also be able to state they they are getting screened (although some of the ones > 70 years of age might be able to say that they used to get tested).

    And that’s before one even takes into account the fact that there are plenty of physicians who don’t actually recommend screening for prostate cancer at all for the majority of patients who have no meaningful risk factors.

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