Patient satisfaction during and after the decision to undergo radical prostatectomy for localized prostate cancer

A paper to be presented at the upcoming AUA annual meeting from what appears to be an ex-US group of clinicians continues to demonstrate the fact that many men get surgical treatment for prostate cancer without anything like a full appreciation of the clinical problem, their treatment options, or the potential consequences.

Obek et al. contacted 125 consecutive patients, all treated by radical prostatectomy at a single institution after a diagnosis of clinical stage T1 to T3 prostate cancer between April 2009 and September 2011 (see abstract no. 1216 in the on-line abstracts for the upcoming AUA meeting). All such follow-up contact was made by a single urologist who had not previously been involved in the patients’ management at all.

The objective was to assess patients’ views on the process that led to radical prostatectomy; whether patients were satisfied with their physicians’ approach during this difficult period; and whether patients were satisfied with the outcome post-surgery. The independent urologist making the calls consistently asked patients the same set of questions, and patients responses were correlated with a database of pre- and postoperative patient variables.

Here are the study findings:

  • 13/125 patients were excluded from the analysis for various reasons and so the analysis was based on contact with 112/125 patients (89.6 percent).
  • At the time of treatment, patients’ average (mean) age was 61 years and their average PSA level was 9.7 ng/ml.
  • Average (mean) follow-up post-surgery was 13.4 months.
  • 23 percent of patients claimed to have been unaware of a diagnosis of cancer.
  • 20 percent of patients reported difficulty during the decision process regarding appropriate management.
  • Possible management options other that surgery appear to have been offered inconsistently.
    • Only 32 percent of patients were advised that radiation therapy might be an appropriate alternative.
    • Only 14.3 percent of patients were advised that active surveillance might be an appropriate alternative.
    • 88 percent of patients did not consider any option except radical prostatectomy.
  • Patients had sought opinions from an average (mean) of  2.7 urologists (range 1 to 9).
  • With respect to who made the decision in favor of surgery
    • In  52 percent of the cases, it was made by the urologist.
    • In 31 percent of cases it was made by the patient.
    • In 17 percent of cases it was a joint or shared decision.
  • Other patient perceptions were that
    • Insufficient information was provided by the treating physician in 18 percent of cases.
    • Side effects of treatment were not discussed at all in 21 percent of cases and not clearly in 3.4 percent.
    • Side effects were not explained explained in sufficient detail according to 58 percent of patients.
  • With respect to the definition of “effective” treatment
    • 41 percent of patients based this on preservation of quality of life.
    • 30 percent of patients based this on longevity (i.e., survival time).
    • 28 percent of patients based this on a combination of survival time and quality of life.
  • 44 percent of patients claimed to have “read about” prostate cancer in making their decision.
  • 42 percent of patients had sought opinions from other people in making their decision.
  • In the case of married couples, the spouse had input into the decision in 62 percent of cases.
  • 16 percent of patients regretted that they had undergone surgery.

The authors are careful to observe that their data represent the consequences of the approach used by their urology department at a specific period in time, and may not necessarily be generalized. However, The “New” Prostate Cancer InfoLink believes that many urology groups could benefit from regular conduct of this type of patient follow-up study.

5 Responses

  1. Absolutely agree. The approach taken by the majority of the doctors is to “eliminate” the problem either with surgery or radiation.

    My doctor initially was gung-ho for either one. I refused. Then he accepted the “watchful wait” procedure — my PSA averages 6; my Gleason score, according to him, is 6; my prostate size is 57 cm3.

    Now that a second spot shows a tiny cell, as the first one does, he’s again pushing for radical prostatectomy, this time with robotic surgery. Has he explained the side effects? No. I’ve had to research them on my own, which can be confusing, and can create false expectations or make me completely depressed. The doctors, to stay mentally healthy have to distance themselves from their patients, but the patient needs a more humane treatment. To me, they are the ones that should guide the patient, not the other way around. We are not trained to diagnose and treat an illness; they are.

  2. Well said. Very interesting that less than one-third of patients defined effective treatment as longevity. More seemed to be concerned with quality of life.

    Expecting much empathy from a surgical specialty may be unrealistic (said with tongue in cheek), but a joint effort between urologist and patient to define goals and work toward them is, I think, a very realistic expectation. The fact that the decision to pursue surgery was shared in only 17 per cent of cases indicates to me that there is a definite failure to communicate.

  3. Urologists are surgeons first and foremost. They also get the first shot at the patients since they do the biopsy.

    I had to do all my own research 15 years ago and nothing has changed. Profit incentives and egos are real problems in medicine. (I am a patient and a physician.)

  4. Yes, they do get the first shot. But, you being a physician and a patient, I ‘m sure realize the difficulty we patients face, not knowing and not being properly guided by the urologists and the oncologists. You should speak more to your colleagues about this important subject to us patients.

  5. From a man happy with my decision for robot-assisted radical prostatectomy (PSA rapidly rising to 7.9, Gleason 6, 18% tumor across both sides base and apex). I presumed that urologists, radiation, and medical oncologists would be wrapped up in their specialties, so I did my own research and reflection. That was fine for a man with wide medical and social experience. For most of us, this is the place for significant time and interaction with nurses and/or social workers that ought to be part of any practice. Only the radiation oncologist that I consulted had a social worker, whose charge would have been extra and not covered by my insurance. There are a lot of gaps that need to be addressed.

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