Consumer education about the value of PSA testing


There is an interesting article in the November issue of the European Journal of Cancer that addresses the quality of consumer information available through the Internet about the value of PSA-based testing for prostate cancer.

Korfage et al. set out to identify and evaluate “core consumer information” about PSA-based testing for prostate cancer available through an Internet-based search in November 2009 — i.e., several months after the initial results of the PLCO and ERSPC studies had both been published. In evaluating the materials that they found, they made two fundamental assumptions:

  • That (mass, population-based) screening for prostate cancer can potentially “reduce prostate cancer mortality at the expense of considerable overdiagnosis and overtreatment”
  • That relevant information about PSA-based testing should be “correct, balanced, and supportive of autonomous decision-making”

These assumptions reflect the findings of the ERSPC results rather more than they do the PLCO results, and one can quibble with the wording (if you dislike the term “overdiagnosis”) but on the whole the assumptions seem to be reasonable. We should note that we have been able to review the full text of this paper and not just the abstract.

The authors sought to identify Internet-based materials using a variety of search terms (which they provide in detail in the paper). Their intent was clearly to try to identify materials available on the Internet that could be easily printed out and given to patients (leaflets, brochures, PDF-based handouts, etc.). Only materials from governmental or not-for-profit organizations were (supposedly) accepted for evaluation (i.e., no material from commercially motivated sources). However, the search terms they used may not have given them the best opportunity to find widely used or widely available resources. As just one example, their search criteria did not include the term “brochure” and others that might lead one to relatively high quality US resources. This may reflect intent on the part of the authors (so that they identified a range of materials) or it may reflect a language issue (since the first language of the authors was not English).

In they end they evaluated materials from 23 different sources, including those from:

Interestingly, in the US and Canada, they selected only one document from any form of prostate cancer-specific support organization (PCNG Cincinnati, a chapter of Us TOO [see online document actually evaluated]).

In evaluating the literature that they identified, the authors focused on a number of key points that they considered to be essential in consumer information for men making decisions about PSA-based screening tests:

  • The potential for early as opposed to delayed diagnosis of prostate cancer
  • Information about reduction in mortality associated with screening
  • Adverse events associated with treatment of localized prostate cancer
  • How a PSA test actually works (i.e., how the test is carried out)
  • The chance that a PSA test will deliver a “false positive” or a “false negative” result
  • The risk for “overdiagnosis” (i.e., the diagnosis of tumors that will never have any clinical significance)
  • The potential need for other tests (DRE, TRUS, biopsy)

The quality of the materials were evaluated against specific criteria:

  • 19/23 of the materials met all key criteria listed above.
  • 12/23 of the materials helped men to understand that their preferences were an important component in the decision to have or not have a PSA test.
  • 16/23 of the materials helped men to be clear in their own minds about what mattered most to them in making their decisions.
  • 16/23 of the materials helped men to discuss their personal preferences with a primary care physician.
  • 10/23 of the materials helped men to become involved in the decision process so that their preferences would be thoroughly considered and discussed.
  • 11/23 of the materials helped men to improve the likelihood that he would in fact make the choice that best matched the features of importance to him.

In their discussion of the evaluation, the authors note the following:

  • Most of the materials “supplied adequate information.”
  • Most of the materials did not actually recommend PSA testing, but the degree of suggestion that PSA testing is a good idea tended to reflect variation in opinion about the value of PSA testing and the autonomy of men to participate in the decision process.
  • Much of the information did not (at the time of evaluation) contain results from the PLCO and ERSCP trials.
  • PSA-based testing for prostate cancer does have side effects.
  • “A sufficient level of decision-relevant knowledge is a prerequisite for informed decision-making” (and how such a level of knowledge can be achieved will vary from person to person).
  • “Understanding all benefits and disadvantages of PSA screening requires a high level of health literacy.”

The “New” Prostate Cancer Internet believes that this article does have one significant (albeit common) flaw, which is the failure to distinguish clearly between the use of the PSA test in individual assessment of risk in a specific man (i.e., testing) and the use of the PSA test in mass, population-based screening. It would help everyone if we could clearly, carefully, and continuously differentiate between these two concepts.

12 Responses

  1. Thanks for bringing this to our attention.

    I have not yet read the sources listed (hope to soon), but I’m wondering if any of them coupled the concepts of screening and of active surveillance for low risk and very low risk prostate cancer. To me, that is critical.

    I’m glad they did not cite the PLCO results or the original ERSPC results. Both were mortally flawed due to extremely short follow-up (considering average survival for PC), contamination, and other flaws. Both are being cited as authoritative when they should not be, as in the recent FDA hearing on 5-ARI drugs for prevention (December 1, Congressional hearing last year, many other places). We need to knock down the credibility of these studies, but it’s like whack-a-mole: people keep citing them without having thought them through.

    As expected, longer follow-up of the ERSPC is showing a substantially increased impact of screening. I have no doubt that will continue as the length of follow-up increases beyond the originally, inadequate, period.

  2. From a quick review of this summary, it appears the study falls into the same trap as most PSA information/ criticism — it equates testing with treatment.

    By way of example, one criterion cited is whether “PSA-based testing for prostate cancer does have side effects”. PSA-based testing NEVER has side effects. TESTING IS ONLY ABOUT INFORMATION. What the patients and their medical advisors do with the test information results in side effects.

    We all need to recite 100 times … “Testing is about information, NOT treatment!” sadly The “New” Prostate Cancer Infolink often falls into this same trap.

    rd

  3. Dear Rick:

    At the very simplest level (even if it has never bothered you personally), anxiety is an extremely common side effect of PSA testing — both before a diagnosis of prostate cancer and after treatment.

  4. I stand corrected — that may be the only side effect! I believe your response makes my point.

    rd

  5. So how do you suggest people should manage that anxiety, which is so stressful for some men that it can force them into demanding a biopsy that they likely don’t need or into refusing a biopsy that would likely be wise? (Again, this has nothing to do with treatment.) You see, I believe that your response makes my point rather than the other way around.

  6. So let me understand Mike — You are suggesting anxiety causes biopsies; we both know biopsies are not the side effects referred to as over-treatment. let’s let your readership judge ….

    As to how I think the anxiety should be managed — for starters, men must be educated as to the meaning of high PSAs before they are tested; secondly, as you well know, we need to rename the very early, minute forms of cancer that are often uncovered via a biopsy. By this, I refer to the one or two positive cores with 1-3 mm of cancerous 3 + 3 tissue — that well could be less than 3+3 but no pathologist will name it so. This is exactly the type of disease that can be well managed by active surveillance.

    I repeat — PSA testing is about information NOT treatment; how that information is manged is the key.

    rd

  7. Prostate cancer screening is a double-edged sword because the resultant treatment options after diagnoses are so brutalizing, gross, and too often unnecessary or ineffective — or worse.

    I have a 90-year-old friend who recently had a PSA test that revealed slight a elevation of 5+ ng/ml, then underwent needle biopsies showing a Gleason score of 3+3. His urologist now is pushing surgical intervention.

    This is a travesty, and must be controlled.

  8. Rick:

    Please note that I said anxiety can cause unnecessary biopsies and that it can cause avoidance of probably necessary biopsies.

    Also, I would love to live in an ideal world where politicians acted exclusively in the best interests of society and where every male over 30 was highly health literate. However, neither of these things will ever happen. Of course PSA testing is about information, not treatment. But the PSA test is a poor source of information, which is why we have a problem. In early stage disease, the PSA test doesn’t help anyone to discriminate well between the very low-risk forms of prostate cancer that you would like to rename and highly aggressive forms of prostate cancer. So long as we are trying to make good decisions while using a poor diagnostic test, we are going to be faced with anxiety and the risk for “over-diagnosis” (and perhaps “under-diagnosis”) as side effects of that test.

  9. This research, as well as that of the American Cancer Society and others, seems unwilling to say anything positive about the use of the PSA test, especially when there is suscipion (erectile dysfunction, infection, prostate enlargement, family history, etc.) of prostate cancer, or disease recurrence. Most physicians I know acknowledge its effectiveness as an initial screening tool for these individuals. The PSA test is also a crucial initial tool in determining men who will be admitted to active surveillance. It is an even more important tool in diagnosing and treating recurrent prostate cancer. Treatment of my own recurrent disease is determined principally by changes in my elevated PSA. Controversy over PSAs use a mass initial screening tool for men who have no previous evidence of prostate cancer has been far too loosely applied to its use at any time. This is unfair to men middle age and older.

  10. IS PHYSICIAN-BASED CONSUMER EDUCATION PRACTICAL?

    A panel of two doctors spoke to our support group a couple of nights ago, and the topic of advising men about the pros and cons of screening came up. I asked the panel whether doctors could devote sufficient time to explain screening adequately, and one of the doctors responded, saying no — there was not adequate time in a real-world setting given all the competing demands on time and attention during a physical exam.

    I’ve thought that for a while now. Assuming that’s true, where does it leave us? One option would be to have a handout that the patient could read while waiting and then ask questions. That would be more efficient, but it would depend on the patient’s actually reading the material.

    Another option would be for health insurance companies to provide material on screenings and incentivize their customers to read it. My large insurer already does something similar, waiving the co-pay for an annual physical if the patient completes a health assessment.

  11. Jim:

    The same issue came up this fall in a discusiion between Otis Brawley, Mack Roach, Matt Cooperberg, and a couple of other practitioners at the Ethnic Health Institute in Oakland.

    PCPs are under too much time pressure to have a personal discussion with each man receiving a PSA, yet we know that is essential to correctly prepare men so they do not over-react to negative results. Furthermore, a similar conversation is required prior to a biopsy.,

    A handout goes some of the way. At Kaiser they are now offering a monthly class for men who have been diagnosed, and we have discussed classes before diagnosis.

    There is no magic fix; notwithstanding, I still stand behind widespread screening, as imperfect as it is, if for no other reason than to address the 30,000+ men who are nailed with locally advanced and advanced disease annually.

    rd

  12. Hi Rick,

    I’m responding to your post at 12/17 12:22 PM.

    For me the solution is to couple screening with information about active surveillance as a highly desirable option for low-risk men. I’m not sure how that is best done, but I’m glad some outfits, like Kaiser, are trying different ways to educate men.

    I’ve heard Dr. Otis Brawley a number of times and have spoken to him twice. I cannot figure out why he is so negative toward screening, even enlightened screening. Regrettably, in testifying before a House committee, he discussed the two faulty screening studies published in the New England Journal of Medicine (PLCO and ERSPC) as if they were sound. I had spoken to him about those studies just before the hearing and thought he appreciated the flaws and lack of credibility. Evidently he did not. He strikes me as a highly intelligent physician with a lot of experience with prostate cancer, and I just cannot make that impression fall in line with his statements about screening.

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