A fascinating paper has just been published in BJU International suggesting that, “Higher education, income and functional capacity were associated with” poorer knowledge about their cancer, poorer understanding about treatment choices, and poorer judgement about survival with and without treatment among a group of 184 patients recently diagnosed with localized prostate cancer.
At first sight there would appear to be a logical inconsistency here, and we do not expect the research published by Beydoun et al. to go unchallenged, but we have not (yet) seen the full text of this paper.
Here is what the researchers did, followed by a summary of their findings.
Their basic goal was to develop a questionnaire that could be used with patients newly diagnosed with localized prostate cancer. The questionnaire was being designed to assess a patient’s knowledge of his cancer, his understanding of treatment choices, and his judgement of his survival (KUJ) – with and without treatment.
Beydoun et al. start out by saying that:
- More than 90 percent of patients in the USA today are diagnosed with localized disease.
- Approximately 94 percent of these newly diagnosed patients initially choose to have some form of treatment
- Most newly diagnosed patients therefore need individualized counseling to address misperceptions about the management of localized prostate cancer.
We assume that these statements are supported by references in the text of the paper, but they would seem to be reasonable statements. (It is worth noting that one of the co-authors of this paper is Dr. Paul Schellhammer, who is a highly respected urologic oncologist, a former president of the American Urology Association, and himself a prostate cancer patient with progressive disease. Dr. Schellhammer is widely respected for his neutrality on some of the more controversial aspects of prostate cancer treatment, and he is pretty good at “getting his facts right!”)
The authors developed and evaluated “an 18-item scale” that was then evaluated among the above-mentioned 184 patients, all of whom had recently been diagnosed at a major urology practice. What they found was as follows:
- Nearly half of the patients provided incorrect answers to most KUJ items.
- 68 percent of the patients had an income of >$50,000.
- 90 percent of the patients had at least a high-school (i.e., secondary school) literacy level.
- Most patients appeared to be physically, mentally and socially healthy.
- Higher education, higher income and higher functional capacity were associated with worse KUJ.
The authors state two conclusions in the abstract of this paper:
- First, they state that, “The KUJ scale is internally consistent and clinicians can use it to identify the educational needs of patients with [localized prostate cancer] before treatment selection.”
- Second, ”Overall, patients who were socioeconomically disadvantaged and those with physical ailments were better informed about the diagnosis, treatment options and prognosis of prostate cancer” [bold italics added for emphasis].
The “New” Prostate Cancer InfoLink has asked the authors to provide a full text of this paper so that we can review it more closely. However, there would seem to be a number of possible reasons for the second of their conclusions:
- This could be correct. Maybe more educated and more “socially advantaged” patients really are less “knowledgable” than many of their peers. There’s an enormous amount of total rubbish about prostate cancer treatment out on the Internet, after all!
- Maybe the conclusion is inherent to the form of the questionnaire the authors developed. It is well known that the way questions are written can prejudice the way answers are given. (“Have you stopped beating your wife yet?” is a classic example!)
- Maybe the ages of the patients questioned (which are not given in the abstract) is of some relevance.
We will have more to say about this paper when we can get a full copy to review.
Filed under: Diagnosis, Management, Risk, Treatment Tagged: | education, income, judgment, knowledge, Treatment, understanding
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As you say, Mike, you’d really need a good deal more information on this one.
I wonder how “better informed” is defined? I can imagine the more highly educated men being “more confused” — and perhaps this translates into “less well informed.”
And of course to measure “better informed” you’d have to define “informed.” Is a man “better informed” if he accepts that surgery is the “gold standard” and RALP (Robotic Assisted Laparoscopic Prostatectomy) compared to the man who believes proton beam therapy is the best choice?
Aloha,
Being well educated myself, I have at various times (many) fallen into positions where I have been assumed to know, but actually did not know, what was going on. The worst case was with my first wife. The minister, because he though he knew both of us, did not give us counsel prior to the marriage. Big mistake.
I can easily see where/when the first time I talked to a urologist, I sat there nodding my head as if I understood what she was talking about and accepting the recommendations that she was making about my proposed treatment. All the time you are saying that this can not happen to me, and it is. Some time during/after the treatment you wake up to reality. I was lucky, when I did wake up, I found (after much study) that the chosen treatment was the best for me (except for the ADT).
Joe
In my experience over the several years I have been involved in research and study of our insidious disease, and subsequently providing counsel to several hundred men or their caregivers, I can’t come to the same conclusions noted. I have no idea of the education of many patients, although by ensuing email exchanges I can pretty much recognize those who seem to grasp the explanations I provide and appear to easily follow directions wherein they can do their own further research. I can only conclude they either have higher education levels, or possibly are just good at assembling information once guided in the appropriate direction. I find that I am questioned more often by those whose cancer has been found to be more aggressive or higher grade. In such cases, education level appears to have little to do with why they are so eager to learn all they can about their cancer. Their questioning is more the result of the stress and concern they are experiencing. On the other hand, I am often contacted by caregivers wherein their man diagnosed with prostate cancer may have gone into a shell and silent mode with them and doesn’t want to discuss his cancer with his caregiver. Or, the caregiver is concerned over the treatment being provided while their man is satisfied with “what the doctor orders” either because he likes that physician or because he doesn’t want the stress of knowing what is going on with his cancer. And I expect confusion over “what to do?” at diagnosis stretches over all levels of education.
I, too, will be interested in what more you might find from the full text of the study.
This paper’s findings are very counter intuitive and is highly suspect. It is probably an example of an author(s) publishing sensational findings just to grab people’s attention. Or they make some major mistakes in their research methodology.
I love to see their questionnaire, methodology, and specific results.
I know three college professors with localized prostate cancer who read and learned so much about their disease that they qualify as experts. They gave me some excellent advice — better than my doctors who didn’t have as much time to explain it so well.
But I’m ready to change my opinion if the author(s) can show that they did their study properly.
I wonder how the authors treated, “I don’t know” as the answer. An educated person may try to give an answer to a question about, e.g., PSA doubling time. An uneducated person would probably answer “I don’t know.”
I’m with John. I would not have been able to answer all the questions “correctly” and consider myself fairly well informed.
For example, here are two where a True/False option was offered:
1.. 4 of 5 patients who get radiation rays (not seeds) are able to have erections firm enough to have intercourse after radiation.
2.. 4 of 5 patients who get radiation seeds are able to have erections firm enough to have intercourse after radiation seeds
I would have found it difficult to answer these questions without qualification as to pre-therapy ability, etc., but would probably have answered both as True. Certainly I have always thought that the side effects from both forms of radiation therapy are equal.
That would have given me a 50% score, since the answer to the first question is False and the second True.
Is there really such a signficant difference between these two modalities? And how would you have answered the questions?
Sitemaster … feel free to delete and not post … I have a somewhat ascerbic view of some patients and I feel this addresses that small segment of the population …. I hope you are well and I think you do an excellent job with your review daily … nevertheless … I did post the abstract of this article and my response on my blog ….
I guess it is OK for some patients — perhaps as you categorize us/them “know it alls,” or my “clever by half,”, or my “go it alone,” or my “internet guy,” or as my mother would say, “a little knowledge is a dangerous thing” types — to be entitled to feel that “the doctor they find themselves in front of are [sic] biased in one way or another.”
These know it alls might just have read some studies that demonstrate clearly that the majority of surgeon urologists will recommend surgery and the majority of radiologists will recommend, well, radiation for the same diagnosis. But that’s not prejudice, we now learn … just the wisdom of the medical world where all knowledge resides.
Forgive me for being as blunt as you doctor, but I believe that the medical world fails its patients dismally, if I too may be insensitive or overly pigeon-hole a particular population in the prostate cancer industry.
Just sending this because I am checking the box that will let me know when others respond. Forgot to do so with my earlier post.