Minimal information available on the likelihood of side effects from prostate cancer treatment

When a man is diagnosed with early-stage prostate cancer, he must decide among four different treatment methods, each of which carries its own set of benefits and risks. The specialists disagree which method is most effective and the research to date is inconclusive.

But when men turn to widely available patient education materials, they’re likely to find minimal information on the likelihood of side effects and a bias toward active treatment, according to a new study published by University of Michigan Health System researchers in the May issue of Annals of Internal Medicine.

“Patients should not rely on only one source of information before making a decision about prostate cancer treatment. We found no single health pamphlet or Web site presented all the information needed to make an informed decision. Prostate cancer patients say they want to learn about the side effects of treatment before making their decision, but our study found many educational materials actually avoided talking about these side effects,” says lead study author Angela Fagerlin, Ph.D., a research investigator in the Department of Internal Medicine at UMHS.

Early-stage prostate cancer is usually treated with watchful waiting, radical prostatectomy, radiation therapy or hormone therapy. No clinical trials have shown a difference in 10- to 15-year mortality among these treatments, so men must weigh the importance of a variety of side effects when deciding what treatment to pursue.

The researchers sought out publicly available materials produced by patient advocacy groups, government organizations, pharmaceutical companies, insurance companies, universities and comprehensive cancer centers. Web sites were identified by reviewing national organizations, pharmaceutical companies and an open-ended Web search.

Any materials that did not cover the four standard prostate cancer treatments, looked at cancer in general or focused on prostate cancer screenings was excluded. The final list included 44 print materials, Web sites, videos and CD-ROMs.

Each item was scored based on whether it contained information on specific topics, from a basic overview of prostate cancer to the side effects of each treatment option. While most materials covered basic information on prostate anatomy and prostate cancer staging, fewer materials addressed negative topics such as potential side effects, emotional discomfort or death.

“There was a disturbing lack of discussion about the likelihood of experiencing the side effects of these treatments, as well as a lack of discussion about what it would be like to undergo these types of treatments,” says Fagerlin, who is also with the Ann Arbor VA Health Services Research and Development Center for Practice Management and Outcomes Research.

Specifically, half the materials did not discuss the need for hospitalization after radical prostatectomy and only 53 percent of print materials talked about catheterization. Incontinence and impotence were frequently listed as side effects of treatment, but bowel disorders and the risk of death were seldom acknowledged.

In addition to content, the materials were evaluated for accuracy, balance and readability. The information was found to be accurate for the most part and only one item showed significant imbalance in describing treatment options. In general, though, the materials were biased toward active treatment over watchful waiting and the impact of side effects was minimized.

The researchers also found the average reading level for the materials was above the ninth-grade level – typical for health information but above the average reading ability of American adults. Materials were also written in passive, third-person, clinical language and contained dense pages full of text with no graphics, photos or other visual elements to engage readers.

The study authors recommend that organizations producing patient education materials offer complete information on how the treatment is provided, including its risks and benefits. The material should speak from a patient’s point of view and should use a clear and engaging writing style and presentation.

To help patients obtain thorough, balanced information on treatment options, the study authors developed a set of patient education materials, available in booklet form, on CD and audiotape, and on the Internet at http://www.prostatecancerdecision.org/.

In addition, Fagerlin suggests patients seek out educational materials from organizations that have established credibility, such as the National Institutes of Health, the Centers for Disease Control and Prevention, the National Cancer Institute or the American Cancer Society.

Funding for the study came from the Michigan Department of Community Health and the Michigan Public Health Institute.