Prostate cancer treatment side-effects largely ignored in patient education materials

Four treatment methods are options for men diagnosed with early stage prostate cancer – watchful waiting, radical prostatectomy, radiation therapy or hormone therapy. Yet, as clinical trials have shown no difference in 10- to 15-year mortality in these treatments, the inconclusive research has failed to provide specialists with assurance as to which of them is likely to be most effective.

Nevertheless, active treatment continues to be encouraged, according to a study by health researchers at the University of Michigan, published in a recent issue of the Annals of Internal Medicine, even though there is little information being made available regarding possible side effects. 

Angela Fagerlin, Ph.D., lead study author and a research investigator in the UMH Health System Department of Internal Medicine noted: “We found no single health pamphlet or website 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.”

In a thorough review of materials widely available to the general public, no source was left unchecked. Patient advocacy groups, government organizations, pharmaceutical companies, insurance companies, universities and comprehensive cancer centers – all were examined for materials that either covered the four standard prostate cancer treatments, focused on prostate cancer screenings or dealt with cancer in general. The search ultimately yielded 44 print materials, websites, videos and CD-ROMs.

Items were scored on topic specificity, and while information regarding prostate anatomy and cancer staging was generally adequately provided, negative topics such as treatment side effects, emotional discomfort or death were less in evidence.

“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,” said Fagerlin.

The need for hospitalization following radical prostatectomy appeared in no more than half the materials. Catheterization was discussed in just 53% of the print materials. Neither bowel disorders nor risk of death received common acknowledgement, although impotence and incontinence were often listed as treatment side effects.

Besides content, materials were judged on accuracy, balance and readability. While information was found to be largely accurate, the bias toward active treatment over watchful waiting was in evidence and the impact of side effects minimized. The materials – written mostly in clinical language and lacking visual elements that might hold readers’ interest – was above the ninth-grade average reading level of American adults.

The study’s authors recommended to organizations producing patient education materials that these materials contain the complete range of information about treatments, including risks and benefits. Additionally, they should be written and presented clearly and in an engaging manner, from the patient’s point of view. A set of patient education materials – available in booklet form, on CD and audiotape, and on the Internet at http://www.prostatecancerdecision.org – has been developed by the researchers to assist patients in their quest for thorough and balanced information on treatment options.

Fagerlin suggested that organizations with 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 would also be good sources for information.