THE "NEW" PROSTATE CANCER INFOLINK

Sometimes — your sitemaster is willing to admit — he can become distinctly aggravated by the quality and conclusions of certain types of research related to the management of prostate cancer. A recent paper in the journal Psycho-oncology seems to offer us an example of this type of research.

The research team carried out a survey that was sent to 999 men who had been diagnosed with prostate cancer between 2006 and 2009. It is not made clear in the paper’s abstract how long after they were diagnosed that the patients received these surveys, but that would have enormous relevance to the study and its results.

The survey questionnaire addressed such issues as the patients’ views on their health-related quality of life (HRQoL), their self-perception of their illness, and their “satisfaction with information provision”. The authors also made the presumption that there might be an association between the patients’ satisfaction with information provision, their HRQoL, and their perceptions about their illness. Of course, whether such a presumption is justified is open to significant question because it depends on what one means by “satisfaction with information provision” over time.

Unsurprisingly, the authors found that, of the 697 patients who returned the completed survey documents, 222 or 34 percent appeared to indicate “dissatisfaction” with the information they were given, and there appeared to be “a significant positive association between satisfaction with information provision and global health”.

Somehow (and we have not seen the full text of this paper, so we cannot comment on the justification), the authors then used this information to conclude that:

A prospective randomized study is needed to study the effect of an intervention that improves information provision on HRQoL and illness perception outcomes.

Now we have a problem!

What sort of “intervention” are the authors referring to? Do they honestly think that giving every patient any type of standardized set of information about the diagnosis and treatment of prostate cancer is going to be able to eliminate “dissatisfaction”? That’s absurd. Patients’ dissatisfaction with the information they are given has numerous causes — many of which are entirely justified and some of which aren’t. Here are just a few:

• If the doctor you are seeing is unengaged in some way and doesn’t answer what you see as simple questions with straightforward answers, you will be dissatisfied.
• If you are basically told what the doctor wants to do as a form of treatment, and you have problems with that (whether your problems are justified or not), you will be dissatisfied.
• If you are given the impression that a nerve-sparing radical prostatectomy comes with a high likelihood of good recovery of erectile function, and you believe this, you will almost certainly be doomed to dissatisfaction!
• If you can’t understand the information you are given and feel that it hasn’t been explained to you well enough, you will be dissatisfied.
• If you are just scared and angry about the whole thing, and people aren’t patient and caring with you, you will be dissatisfied.
• If you find out that you were an excellent candidate for treatment X some time after your were given treatment Y, but no one ever told you about treatment X prior to giving you treatment Y, you will be dissatisfied (especially if you think that treatment X sounds like it would have been a really good idea for you and the outcome after treatment Y wasn’t exactly great).
• If you are smart enough to have done a lot of your own research and are then treated as though none of that research was relevant or appropriate, you will be dissatisfied.
• If you are a conspiracy theorist who believes that the medical and pharmaceutical community has been suppressing knowledge about how to actually cure cancer for decades, you will be dissatisfied (regardless of the quality of the information you are actually given).

Looked at from that perspective, it is perhaps surprising that as many as 66 percent of the men surveyed in this study did appeared to express satisfaction with information provision! (Well, perhaps it would be more accurate to say that that 66 percent of the study cohort didn’t express “dissatisfaction.”) But of course it’s hard to be dissatisfied about what you don’t know or understand.

It seems to The “New” Prostate Cancer InfoLink that this study and the mindsets behind it continue to propagate what we would see as a complete lack of patient-centric thinking about what goes on when a man is diagnosed with prostate cancer. For the vast majority of men, the implications of such a diagnosis have way more to do with his whole idea of “what it means to be a man” than they do with whether he understands the risks and benefits of particular types of treatment. To date, we have still never seen any form of patient education materials for newly diagnosed prostate cancer patients that begin with the fundamental fact that most men are scared to death not by the fact that they have cancer but by the fact that this form of cancer could lead to them spending whatever life they have left either incontinent or sexually impotent or both.

Perhaps it is time for the patient community to rise up and make clear to the medical profession that the entire conversation about diagnosis and management of prostate cancer needs to start from a very different beginning point. That’s going to take a lot more than the prospective randomized study proposed by the Dutch researchers.

Editorial comment: Your sitemaster is allowed the occasional “rant”. That will certainly be it for September 2015!

Filed under: Diagnosis, Living with Prostate Cancer, Risk | Tagged: attitude, fear, information, knowledge, reality, reason, satisfaction |