A survey of patient education materials—one-sided information common

Our office often receives calls asking for a source of balanced information about the treatment options for early prostate cancer. It has always been a stumper. Our usual recommendation is the National Cancer Institute's treatment summaries (www.cancer.gov), but this is a disappointing source of information where it concerns prostate cancer. Unlike other cancers, this one might be just as well left undetected and untreated (more on that later), and it is hard to find anything that gives a balanced view of all options, including no treatment. In fact, we have yet to find one.

That's why we were interested in a new survey of "Patient Education Materials about the Treatment of Early Prostate Cancer," published last month in Annals of Internal Medicine. 546 consumer pamphlets and Web sites were surveyed and given scores based on these two crucial questions: Are all the options presented? Are the potential harms as well as potential benefits presented? Professional organizations, medical centers, and drug companies were among the publishers of the educational materials in this survey.

What makes early-stage prostate cancer such a good test of an information source's honesty is the fact that no head-to-head comparison study of all three treatment options has ever been conducted, though radical prostatectomy has long been the common treatment. For what other cancer would a prospective patient face the choice of having an organ removed, irradiated, or left alone unless symptoms develop (watchful waiting)--all of which are equal in terms of survival?

So when this patient education materials survey was published last month, we were ready to champion the top choices in this newsletter and add a link within our Web site to those with the high scores. The first stop was the Web site of the medical division of the University of Toronto (www.library.utoronto.ca/medicine/prostate).

After multiple failed attempts to get through and no response from the site's Web master, it was on to the next high scorer, the Web site of Memorial Sloan-Kettering Cancer Center, which describes itself on the local public radio station as providing, "The best cancer care anywhere."

This Web site's information amounts to a sales pitch for certain radiation and surgical techniques pioneered by doctors at Memorial Sloan-Kettering Cancer Center. Don't expect a full explanation for why watchful waiting might be worth considering. This option merits only five sentences. The American Cancer Society wasn't any more forthcoming on watchful waiting, providing exactly the same minimal amount of space.

How did these Web sites score so high? That question merited a return to the statements written by Angela Fagerlin, PhD, of the University of Michigan, and colleagues after completing their survey:

All sites reviewed were accurate, but some erred by
omission, most typically de-emphasizing side effects
of therapy. Several sites presented so little of the
key content that they generated somewhat misleading
impressions.

And this about the printed materials:

No print education materials we evaluated had
clinically significant misstatements, although some
references were out of date because of the publication
date. We found only one case of clinical significant
imbalance in the treatment descriptions. However,
a general bias was toward active treatment
that minimized the role of watchful waiting. In addition,
the likelihood and impact of side effects were
minimized [emphasis ours].

What is really needed here is not just a balanced view of treatments, but an honest view of prostate cancer. Men die of prostate cancer. A small percentage of all prostate cancers are aggressive, and rapidly fatal no matter how early they are detected and treated. The majority, however, are so slow growing that they will never become life threatening or produce symptoms. In between, there may be a small proportion of men with a type of prostate cancer that could benefit from early detection and immediate treatment. An ongoing clinical trial is pursuing the question of whether early detection of prostate cancer is lifesaving. Though men will be told their PSA and Gleason scores, no test can determine accurately which prostate cancers will become aggressive and which will remain dormant.

As this survey shows, treatment-related harms are usually left out of the information given to patients. Since the choice of watchful waiting is counterintuitive to most people, it deserves a clear and lengthy explanation. After all, hasn't the early-detection-saves-lives message been drummed into the public's consciousness for years?

There is a reasonable amount of preliminary research to suggest that men should give serious thought to avoiding a PSA test for prostate cancer because it is unclear whether early treatment is lifesaving. For example, a Swedish study, which had randomly assigned men to watchful waiting or radical prostate surgery, showed that the men who underwent surgery did not live longer than those who did not. After six years, there were 4% fewer prostate cancer deaths among the surgically treated men. That benefit, however, was canceled by the fact that their quality of life was worse (incontinence and impotence are treatment complications) and their 4% higher rate of deaths from other causes.

Several studies monitored untreated men with favorable results, for example, one followed Swedish men who were not treated unless symptoms developed. At 15 years, those whose cancers appeared to be confined to the prostate at diagnosis had a prostate cancer death rate of 11%. In the U.S., men treated with a radical prostatectomy for early-stage disease have a similar mortality rate. Don't expect to hear about these studies from your average urologic surgeon. And there is no financial incentive for a medical center's Web site to provide a balanced description of watchful waiting.

What you can do:

--Send for the free pamphlet that got the best score in the print material category by calling the National Cancer Institute (NCI) hotline, 1(800) 4-CANCER. Ask for "Understanding Treatment Choices for Prostate Cancer." The same pamphlet can be read at the NCI Web site (www.cancer.gov/prostate). It includes a survey of prostate cancer patients' experiences with treatment-related complications, such as incontinence and impotence.

--Talk over the options with a knowledgeable primary care physician. When getting a second opinion about treatment, recommendations will correspond to the bias of the specialist. Not surprisingly, urologic surgeons advise surgery and radiation oncologists recommend radiation therapy. As with the information sources in this survey, a test of a primary care doctor's knowledge would be his or her opinion of watchful waiting.

--Do not have a PSA screening blood test for prostate cancer without informing yourself beforehand. Read the book described on page 3 and "PSA Screening for Prostate Cancer: An interview with Otis Brawley, MD," (see HealthFacts, May 2003 or our Web site www. medicalconsumers.org).