The value of the PCTRF comparative outcomes data

The “New” Prostate Cancer InfoLink wants to be clear for our readers that we are significantly less enthusiastic than others about some of the information being offered to patients, clinicians, and payers through the web site of an organization known as the Prostate Cancer Treatment Research Foundation (PCTRF).

Our fundamental problem with the information being offered through this web site is that much of it has been developed on the basis of data that was generated long before expectant management (active surveillance and other forms of non-invasive management) was being recommended as the most appropriate form of management for many men with low- and very low-risk forms of prostate cancer. Thus, the outcomes data presented on the PCTRF web site for particular types of therapy are biased by the inclusion, in the databases used to develop the outcomes data, of outcomes of treatment of men with low- and very low-risk prostate cancer who would, in fact, have benefited from being managed without any form of invasive treatment at all (at least until the need for such treatment became evident). The fact that such men may have lived for 10 or more years after surgery or brachytherapy or any other form of treatment is actually misleading. Why? Because in the vast majority of those cases the patients would have done just as well with no treatment whatsoever!

As a consequence, we absolutely reject the claim on the home page of the PCTRF web site that their data should “be used as a standard reference for patients, physicians and policymakers as a means to determine appropriate options for prostate cancer therapy.” We can see no grounds for such a claim whatsoever.

Furthermore, since the PCTRF web site fails to include any validated outcome data for low-risk groups of patients on expectant management, the data being presented in the charts prepared by PCTRF are utterly misleading, because the treatments being evaluated are no longer the recommended forms of first-line therapy for many men with low- or very low-risk prostate cancer. In fact the PCTRF criteria for acceptable data, at this time, categorically exclude validated and peer-reviewed outcomes data for men on any form of expectant management!

We have excellent data that are now available on the long-term follow-up of patients diagnosed with low- and very low-risk patients which, if incorporated into the PCTRF algorithms, might well give better context to the data that PCTRF seeks to offer. If PCTRF was to reconstruct their charts to include long-term active surveillance data from groups in Canada and elsewhere, then we might be able to get a much better perspective on the relative values of all appropriate and possible forms of management in a way that really could help patients. However, even then, it needs to be very clearly pointed out to users that potential outcomes data for individual patients are highly dependent on a whole bunch of factors that go way beyond the type of treatment given. Such factors include:

  • The training, skill, and experience of the treating physician and his/her support team
  • The accuracy of the patient’s pre-treatment evaluation
  • The accuracy of the patient’s pre-treatment characterization and prognosis
  • The importance of quality as opposed to quantity of life for the individual patient
  • The individual anatomy of the patient and the precise location of any amount of localized or locally advanced cancer

Fundamentally, The “New” Prostate Cancer InfoLink does not believe that the type of meta-analysis of the available data carried out by PCTRF can be used with a high degree of reliability and accuracy to predict the probability of specific types of outcome for individual patients today. We recognize that others may have different views, and we recognize their rights to express those views, but we would simply caution our readers that — in our opinion — PCTRF is making claims for their data analysis and projections based on that analysis that are less than well justified.

11 Responses

  1. Looked at the site.

    Seems that radiation easily beats surgery, based on the graphs.

    Any comment on that?

  2. Doug:

    I have never been comfortable with almost anything about the way these data have been compiled, analyzed, and packaged. I am therefore not comfortable with almost any of the output.

  3. Thanks for the warnings. We rely on you.

  4. Sitemaster: Your concerns regarding this recently developed website are well explained.

  5. Wonderful observation. I chose AS in 1998 and continue its use. Most of the information on this site is of no value to us AS types. My numbers, at age 76, continue in the AS realm.

  6. I searched for “active surveillance” on their page and don’t get any useful information. Rather odd.

  7. While I have no basis to question your analysis or recommendation, Sitemaster, there are a number of highly reputable and credible medical professionals on their panel, several of whom I know support active surveillance as a treatment option.

  8. Dear Rick:

    And in all honesty I have to say that I am surprised that some of these individuals agreed to having their names associated with this project.

  9. It is interesting that this organizaton has been the subject of comment, because some time ago I looked at their publication of the Prostate Cancer Results Study (PCRSG) which was posted on the website of the Prostate Cancer Treatment Center in Seattle. The % progression-free survival vs follow-up time was plotted for the available treatment studies including brachytherapy, EBRT and RP for low-, intermediate- and high-risk prostate cancer.

    What was surprising to me at the time was how, for low-risk prostate cancer, the % progression free was approximately (read off their graphs) 80-86% for RP, 88-92% for brachytherapy, and 85-90% EBRT at about 10 years follow-up. I wondered why the RP patients were not cured by surgery.

    The results for treatment of intermediate- and high-risk prostate cancer also favored brachytherapy and radiation, over surgery. The % progression free for intermediate prostate cancer at 10 years treated by brachytherapy was roughly 87%, 65% for RP and 79% for EBRT.

    At the time of reading this study, without looking up the individual studies plotted on the graphs, one wondered if there was any bias favoring radiation therapy, since that was the specialty of the Seattle Treatment Center.

    If the RP results (% progression free) for low- and intermediate-risk cancer are true, this would sure lend credence to this site’s endorsement of analyzing surgical specimens with updated techniques to try to discern who might need proactive secondary treatment after RP before clinical recurrence.

    Thank you for making a recomendation which will support this kind of research and encourage patients to ask, “Ok, what else could we do to double check the current clinical impression?”

  10. Great article.

  11. I have several other concerns with the site. I find the selection of studies to be highly selective. They have left off many studies — and not just those with expectant management — that conform to their criteria. What they call their expert panel, is not a panel that evaluates each study included, it’s simply a list of researchers who have allowed their studies to be listed. (I asked one of them.) The mailing address is exactly the same as the Seattle Treatment Center, Peter Grimm’s brachytherapy practice in Seattle. It is not an independent association that an unwary observer might infer it to be. If the results had merit, they would be published in a respected peer-reviewed journal, and not just on a website.

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