Patients and urologists both prefer active surveillance (maybe, in the Netherlands)

It has been a while since we saw data from a contemporary survey of the views of urologists and patients on their preferences for appropriate management of early stage, localized prostate cancer.

The study described below, conducted by de Bekker-Grob et al., appears to refer exclusively to the views of patients and urologists in the Netherlands (although the abstract does not actually say this), so we may need to interpret the results with caution when it comes to their relevance to the rest of the world.

de Bekker-Grob et al. sent surveys to 150 patients who were awaiting the results of a prostate biopsy and to 150 urologists. The surveys were designed to elicit information about the preferences of patients and of urologists using scenarios based on common methods (radiotherapy, surgery, and active surveillance) for the management of early stage prostate cancer and risks of urinary incontinence and erectile dysfunction.

Here are the basic results (but we have not seen the full text of the paper):

  • 110/150 patients (73 percent) responded to the patient survey.
  • 50/150 urologists (33 percent) responded to the urologist survey.
  • In general, patients and urologists both expressed a preference for active surveillance compared to other forms of management, but …
  • Patients expressing anxiety and/or depression about their potential diagnosis expressed a preference for radical treatment to active surveillance.
  • Risk for urinary incontinence was an important determinant of patients’ and urologists’ stated preferences for prostate cancer management (P < 0.05).
  • Risk for erectile dysfunction due to radiotherapy was important to urologists (P < 0.05).
  • Treatment modality also influenced patients’ stated preferences (P < 0.05).

So the good news here is that urologists in the Netherlands who respond to surveys like this appear to be very willing to discuss active surveillance with many of their patients.

The less good news here is that:

  • Risk for erectile dysfunction due to surgery does not appear to be of significance to the urologists. (Is this just denial?)
  • 67 percent of the urologists surveyed didn’t think that a survey like this was important enough to respond to.

It would be nice to think that we are seeing a growing desire and willingness among the urology community to foster patient knowledge about active surveillance. Unfortunately, this survey does not necessarily support such a belief. It is probably true that urologists who have long talked to their patients about the benefits of active monitoring and the older “watchful waiting” are more confident about doing this today. But these may be the urologists who were willing to respond to a survey like this, in which case we have no idea what is going on in the heads of the other 67 percent of urologists (in the Netherlands)!

de Bekker-Grob et al. conclude that while patients and urologists appear to have shared preferences about the options for management of early stage prostate cancer, they come to these preferences from different perspectives, and that urologists need to be very aware of this when discussing the options with their patients. This, of course, is probably true.

5 Responses

  1. What I find compelling is that the “risk of impotence/incontinence” does not seem important to urologists. That was evident to me when I talked to several of them in my research.

    They seemed to accept that fact that male patients that choose surgery or radiation also assume their own risk by decision, thereby liberating the physician from professional accountability. Again, there is no easily found report card on urological success that is physician specific.

  2. I am fluent in Dutch, a Dutch citizen, and an “expert witness” about quite a bit of Dutch healthcare (the first formally privatised system in the EU in several senses). Do you have a location for the source?

  3. Oooops … Sorry George … I left out the link to the abstract (now inserted above). The original paper appears in the British Journal of Urology (so your Dutch literary skills presumably aren’t essentials), but all the authors appear to be based on the Netherlands, so I was and am still assuming that this study was conducted among Dutch physicians and patients.

  4. This will be a bit difficult for me to respond to adequately and objectively, since it concerns myself and one urologist, an important person in what I can best describe as the Dutch prostate cancer industry. First note that Dutch care was formally near-totally privatised on January 1, 2006.

    In mid-December 2008 I saw a Dutch urologist at a major hospital. After a biopsy he told me I had high-risk prostate cancer, that I was excluded from brachytherapy “because your prostate was too large,” and was told to choose between external beam radiotherapy and radical prostatectomy. He told me nothing else. The interview lasted about 10 minutes, a period set by the private insurers (at that time mine was owned by AIG through Eureco, but few Dutch residents including me knew this). To keep this short, I had no basis for choosing, but I did wonder what my prostate size had to do with the exclusion of brachytherapy. I got a second opinion in secret in Sweden, discovered that crucial information about brachytherapy treatments was for some reason not offered me, left for Sweden, got a complex treatment that included brachytherapy (so in one sense the urologist’s statement was not accurate), and seem to be alive right now. I won’t go back.

    The point is, that no discussion took place. I was offered a “forced choice,” period. Not one word from him about side effects. I hope this is not a typical case, and that prostate cancer care in the Netherlands has been improved. I doubt it, since I do have an “idea of what is going on in the heads” of a good number of Dutch urologists and their private insurer handlers.

  5. Urologists are a funny lot. Reading George Berger’s story forces me to relive mine. About 9 years ago with a PSA of 4.9 (as it had been for many years) I was given a DRE by one of the top NHS urologists in Hertfordshire.

    He said, “I want to do a biopsy”.

    “Why?” said I, in a rather faltering voice.

    “Well”, he replied, “because I think you have cancer of course.”

    “Heavens, how sure are you?”, I responded.

    The answer came 30% or probably 40% sure. I was also reminded I had 10 minutes and had already exceeded this time limit. The transrectal biopsy was negative. It was a very stressful 3 months of waiting (yes that is how long it all took).

    Nine or 10 years later I have seen a colleague of said urologist who waded in with a “Why have you not returned for repeat biopsies?”

    “‘Cause nobody asked me to,” I answered.


    “I want to do another biopsy,” said said urologist.

    “Not on your life.” said I.

    So at 70 I am in the same loop. The trouble is that with a bilateral hip resurfacing I suspect that any diagnostic imaging will be impossible. A work in progress.

    The London Prostate Centre, based on 10 years of regular PSAs and a DRE has said that they “do not think we are looking at anything sinister here.” Of course they too would have liked the benefit of a a 3-T MRI scan.

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