Patients’ understanding of the risks and benefits of first-line treatment

A newly published article in BJU International has (finally) proven something many prostate cancer educators and advocates have known for years: many patients have a very poor appreciation of the risks and benefits of their differing treatment options at the time they make decisions about first-line treatment for localized prostate cancer.

A group of researchers (van Stam et al.) in The Netherlands set out very specifically to evaluate what patients understood about the differences in outcomes and risks associated with management of localized prostate cancer using radical prostatectomy, radiotherapy, and active surveillance (AS). To do this they surveyed > 400 patients with localized prostate cancer after they had been given information about these forms of management but before any actual treatment was initiated. They then  compared the patients responses to the survey to information about the outcomes of these three forms of management based on the published literature. (We haven’t seen the full text of this paper so we don’t know exactly which data was used as a comparator, but we suspect that it would have to have included the data from the ProtecT trial.)

Please note: It is highly relevant to the study by van Stam et al. that a paper by Sørensen et al. from 2015 showed that The Netherlands exhibited the highest level of health literacy among a total of eight European countries!

Here is the brief summary of what van Stam et al. report:

  • 371/426 of the patients (87 percent) provided evaluable responses to the survey.
  • 211 patients did not appreciate that the risk of disease recurrence after surgery is comparable to the risk of disease recurrence after radiation therapy.
  • More that half the patients did not understand that
    • Patients treated with radical prostatectomy are at greater risk for incontinence than patients treated with radiation therapy (n = 202)
    • Patients treated with radical prostatectomy are at greater risk for erectile dysfunction that patients treated with radiation therapy (n = 190)
    • Patients treated with radiation therapy are at greater risk for bowel problems that patients treated with radical prostatectomy (n = 211)
  • 157 patients overestimated the potential need for definitive treatment after starting on active surveillance.
  • 333 patients did not understand that mortality rates (at 10 years?) after active surveillance, radical prostatectomy, and radiation therapy are comparable.
  •  The effect sizes were small, but consulting with a radiation therapist or a clinical nurse specialist
    • Improved patients’ understanding of the risks
    • Reduced patients’ levels of emotional distress

The “New” Prostate Cancer InfoLink has long suggested that every prostate cancer patient should the opportunity to meet and talk with a neutral “educator” (a clinical nurse specialist or similar) prior to making any final decisions about management/treatment for localized prostate cancer, i.e., with someone who has no “axe to grind” with regard to the patient’s decision about the management of his disease and whose only interest is in ensuring that the patient has an accurate appreciation of the risk and benefits associated with the differing type of treatment available to him.

van Stam et al. conclude (with admirable tact) that:

Prior to choosing treatment, the majority of [prostate cancer] patients poorly understood the differences in treatment risks. Greater efforts should be made to better understand why these misperceptions occur and, most importantly, how they can be corrected.

The “New” Prostate Cancer InfoLink is of the opinion that, now that we have very clear data about the relative risks of active surveillance as compared to invasive treatment (most particularly for men over 65 with low- and very low-risk prostate cancer) ensuring that we can correct historical and current patient misconceptions has become a major priority. The findings reported by van Stam et al. are simply unacceptable today.

5 Responses

  1. many patients have a very poor appreciation of the risks and benefits

    which is what they gain from their advising doctors:

    An absolutely shameful and appalling performance by the medical profession.

  2. Dear Mr. O’Neill:

    The reference you provide has nothing whatsoever to do with treatment choices. It addresses what physicians do or don’t tell patients about screening for risk of prostate cancer — which is an entirely different issue.

    Most “screening” for prostate cancer is not done by urologists or radiation oncologists. It is done by primary care physicians. Most recommendations about initial treatment for localized prostate cancer is given to patients by urologists. You seem a tad confused.

  3. It is very important that men who have prostate cancer do a lot of intensive research about the different treatments that are available. All of this is my personal opinion and I do not have any education in regards to medical training but I was diagnosed in January 2017 of having prostate cancer. With the current biopsy procedure my pathology report stated I had a Gleason score of 3 + 4 = 7. It was considered intermediate risk. At this period of time my Gleason score was in the middle for suggestion of invasiveness. Gleason scores of 3 + 3 = 6 or lower numbers had listed the “wait and watch program”. Anything in the Gleason scores above 3 + 4 = 7 and a Gleason score of 8 or more, including a Gleason score of 4 + 3 = 7 was considered to be more invasive.
    My baseline PSA in 2016 was 4.8 and the previous year my PSA was 3.4.

    My PCP had diagnosed me as having BPH and I had been having issues with ED and was prescribed medication. The urologist who examined me also found some hardness with the results of the DRE. The other factor, as far as I was concerned, was my age of 70 years old. I had consultations with three urologist/surgeons — two were where I live and one other was at Duke University Hospital. I realized after a couple of months research that it seemed to me there are basically only three choices of procedures. One was “active surveillance”, i.e., “wait and watch”, another was radiation (including placing radiation seeds in the prostate, external radiation, and proton radiation therapy) and the third was surgery, complete prostate prostatectomy. Oh, there is one other treatment and it was recently approved by FDA, called HIFU. I did check on this and last March I was advised that this procedure had to be paid for out-of-pocket. I did have a friend who referred me to a practice that offered this HIFU and I did not want to pay the entire cost out of my pocket. It is known that as a side effect of HIFU, after the procedure, the patient could experience a collapsed urethra which had to be fixed and I was told this could be a very painful side effect because you are unable to empty the bladder.

    I chose the surgery for removal. There were other options, but I decided that the surgery was the only sure way as far as I was concerned, of knowing, after the pathology report was returned after surgery, that the cancer was only contained inside the prostate capsule.

    Luckily for me this was the result. I was also very fortunate to have my youngest brother to help with the issues and explain to me some factors of dealing with this complicated disease, as he works as a molecular biologist. I had completed my research and about 6 months from when I was diagnosed, I had a complete radical prostatectomy on June 6, 2017. Looking at doing the “watch and wait” before I had selected surgery, some of my issues were it was recommended that I did not qualify for the “watch and wait” because of the 3 + 4 = 7, that number “4” was a concern. I also did not like some of the issues of having radiation that any complications from this treatment later and the prostate needed to be removed, surgery was not an option. I have learned this issue may have improved very recently as more radiation was the only solution. There was a problem for me with the waiting program and all the other treatments because any changes in the future PSA tests could indicate more biopsies using the imaging with the probe and 12-needle samples from the prostate. My brother knew and so did I from my past biopsy that this procedure involved the needle samples had to be inserted through the rectum. I hope that the new procedure I have read about called isoPSA using blood samples taken from the arm will be approved.

    I have discovered from talking to different men dealing with deciding which treatment they feel is best for them many of these patients did not want surgery. I finally got some truthful responses that it was because of the side effects of incontinence and more importantly issues pertaining to ED which along with the incontinence the future results could be permanent. The other interesting information I finally was told was that the patient might have to select another procedure because of general health problems such as being overweight, having high blood pressure, and also being diabetic, in which case the medical professional would not do any surgery. Many of these patients were unable to qualify even with help from physicians to be accepted to have surgery. In doing research you will have to be sure that the surgeon you have selected has quite a bit of experience doing prostate removals, has been trained completely using the da Vinci robotic assistant, sparing of the nerve bundles that are around the prostate and minimally invasive surgery.

    If you select a teaching medical hospital you need to sign a document stating you do not want a new intern-trained physician doing prostatectomies without a certified surgeon being present to direct the procedure. I had done all my “homework” dealing with the criteria I mentioned above but I know there are no guarantees of the outcomes from the known side effects. One thing I was told by my surgeon as agreeing to my wishes to be honored, he said you will most likely see after about 2 months a big reduction in the use of garment protection pads and almost exactly 2 months from my surgery I am using maybe one pad per week. He said it will be a longer time element in regards to the ED from you surgery and at the end of my 2 months from surgery I did notice sort of a half erection in waking up from sleeping!

  4. At the recent ASTRO meeting a group analyzed the outcomes of first-line therapy for patients with only Gleason score 10. The patients had undergone RP, EBRT, or EBRT + brachytherapy (BT).

    Disease-free survival was highest for patients treated with EBRT + BT, lower for EBRT, and lowest for RP. However, overall survival was rather similar for all three treatments.

    No doubt, radiation adds some general reaction compared to a local treatment like surgery alone. However, patients who have recurrence after surgery are exposed to radiotherapy at salvage more than patients with recurrence after radiotherapy, therefore most people looking on the two survival curves may not get the point as to what is most active. The overall survival is not only due to the primary treatment but to the combined initial treatment and the salvage treatment. Also, prostate cancer is not “one disease”. Aggressive prostate cancer with a Gleason score of 10 is a different disease than prostate cancer with a Gleason score 6.

    Confused? No way. Keep this information in mind when you read generalized messages as to what to do and why. Make up your own mind but keep the facts right.

  5. Thanks for your comment about how many patients with prostate cancer should be more aware of their treatment options. I find their reactions to radiation treatment and its consequences very interesting. My husband and I are considering hiring medical professionals that will keep him well informed about his treatments and other information regarding his prostate cancer.

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