Patient-reported outcomes and the management of prostate cancer

Andrew Vickers, PhD, who works at the Memorial Sloan-Kettering Cancer Center in New York, is not a physician. He is a statistician and a research methodologist. And he is a member of the Scientific Advisory Board to The “New” Prostate Cancer InfoLink.

Over the past 12 or so years, Dr. Vickers has been a key figure in bringing a new level of rigor to research in the field of prostate cancer through his work on multiple issues, and in an editorial in this week’s issue of the Journal of Clinical Oncology he has raised significant questions about the current level of validity of research findings in the evolving field of “patient-reported outcomes” (PROs).

Now we should be clear that no one is questioning the importance of better understanding of PROs in the field of prostate cancer. The effects that treatments have on a host of outcomes, and how they affect men of different ages, races, sexual orientations, social dispositions, etc., are key to “how well” those treatments may actually be working for patients — as opposed to how well their physicians may think that those treatments are working for patients.

But the primary issue Vickers raises in this editorial is that how we ask the questions may be significantly impacting the answers to those questions. And that we really haven’t done enough work to validate whether we are asking questions in the right way for all patients. In particular, Vickers notes examples about the different ways different groups of males think about terms like “sexual satisfaction”, “have intercourse”, and even “erection” and how use of these terms may therefore profoundly affect the answers given to certain types of question.

One of the more obvious is that gay men are likely to answer “No” to a question like, “Have you had sexual intercourse in the past 6 months?” But that doesn’t mean they haven’t had satisfactory sexual activity in the past 6 months. However, the way the answer would be interpreted using a standardized IIEF questionnaire about sexual function before or after treatment for prostate cancer would be that this man had not been having satisfactory sexual activity.

Over the past decade, Prostate Cancer International and The “New” Prostate Cancer InfoLink have been strong advocates for the importance of PROs in the study of the effectiveness and safety of all forms of management of prostate cancer. We have also been been strong advocates for the type of rigor that Dr. Vickers has been promoting in the field of prostate cancer research. Once again, we believe that he has raised important considerations that have major implications for this area of research, and we sincerely hope that his colleagues across the field of prostate cancer research and prostate cancer PROs in particular will “hear” what he is saying and start to seek serious improvements in the validation of how such research is being carried out so that we can improve the clinical utility of PRO data.

The full text of Dr. Vickers’ editorial is available on line and would be a useful resource for many prostate cancer educators and support group leaders.

2 Responses

  1. Oy — don’t get me started. This has been a pet peeve of mine for years. EPIC and SHIM do not ask the right questions on sexual issues, and the analysis (when they even bother to collect the data) is misguided. Since none of the standard instruments include a question on sexual preference, we lack any useful data on men who have sex with men. In my experience, neither urologists nor radiation oncologists think this stuff is very important to patients. I wish they could sit in on my support groups.

  2. Bravo. And even a straight man who has been having very satisfactory sexual activity albeit without penetration would have his answer misinterpreted as that man not having had satisfactory sexual activity.

    Very important work to be done here.


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