NEWS

Informing Confident Decisions When Weighing Uncertain Risks

Gwen Moulton

At a recent cancer control conference an audience member stood up and quoted the adage that more men will die with prostate cancer than from it. Then she asked the expert panel why men should be screened for prostate cancer at all when doctors do not seem to agree on the most effective screening techniques, the follow-up treatment, or the long-term risk.

Such controversies create perplexing problems in informing patients, medical practitioners, and public health officials about the current scientific consensus, or lack of it, on the effectiveness of screening for various types of cancer — as measured by a decrease in mortality rates.

These issues were addressed at the conference sponsored by the Center for Disease Control and Prevention in Atlanta, Ga.

Although decision aids can help patients to weigh the facts against their individual personal values, the trick is to know which ones work for which people under which clinical circumstances. The available materials, which do not promote a particular decision or intervention, range from pamphlets, pocket-sized cards and videos to one-page handouts, lengthy publications, and interactive computer or Internet-based programs.

The first randomized trials evaluating such decision aids are beginning to show a benefit to patients in making informed decisions about cancer screening and treatment — whether to participate in a clinical trial, to screen or have a diagnostic test, to undergo a medical or surgical treatment, or to begin preventive therapies. Annette M. O'Connor, Ph.D., a professor at the University of Ottawa, and others summarized the literature on this emerging field of research in the most recent monograph of the Journal, Cancer Risk Communication: What We Know and What We Need to Learn (No. 25, 1999).

But O'Connor also cited gaps in research, including how the materials perform for different clinical decisions, whether practitioners and culturally diverse patient groups would find them acceptable, and optimal strategies for dissemination.

Value Conflicts

Prostate cancer screening provides one of the most dramatic examples of value conflicts inherent in a cancer decision because the follow-up choices after diagnosis involve pitting the immediate risks of surgery — incontinence and impotency — against the long-term risk of advanced cancer, said Robert M. Hamm, Ph.D., of the University of Oklahoma Health Sciences Center.



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Dr. Robert M. Hamm

 
Hamm and researchers at the university's Department of Family and Preventive Medicine are looking at a balance-sheet approach to the complicated dilemma of whether to screen for prostate cancer.

The multi-page balance-sheet device may prove useful in conveying knowledge about screening and treatment options, possible outcomes, and probabilities of possible outcomes, said Hamm. It will include text, numbers, and graphic illustrations to convey pertinent information, such as prevalence, screening outcomes, and treatment effectiveness.

Hamm's study will compare the decisions made by people reading the balance sheet with those of people reading a conventional brochure; by people reading the balance sheet with a counselor discussing it; by people reading the balance sheet without a counselor but with the spouse; and by people reading the balance sheet with both a counselor and a spouse.

As with other decision aids under development in the field, it remains to be seen whether a balance-sheet device would be too difficult for some people to understand, would exclude the emotional aspects of the decision, or would be effective with people with certain educational backgrounds, Hamm noted.

"We're making beautiful tools for educated patients, but taking that and translating it for everybody is an important part of this research," Hamm said.

The lack of information about the effect of early detection and early treatment on mortality leaves researchers and clinicians to determine how best to clarify the controversy and current state of the evidence without biasing an individual's decision to screen or not to screen, said Kathryn Taylor, Ph.D., assistant professor at the Lombardi Cancer Center, Georgetown University, Washington, D.C.



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Dr. Kathryn Taylor

 
For African American men, the dilemma is more pointed: As a group they have the highest incidence rates of prostate cancer in the country at 240 cases per 100,000 men, and the highest death rates at 55 deaths per 100,000. Taylor is collaborating with an African-American men's organization, the Prince Hall Masons of the Washington, D.C. area, to conduct a randomized trial of two types of decision aids.

"The goal [for this study] was to lay out the potential advantages and disadvantages of screening and to let men make the decision themselves," Taylor said. Her co-investigators on the project from Prince Hall Masons are: urologist Jackson Davis, M.D., and physician assistant Ralph Turner.

Focus groups helped the researchers develop both the content and format of the decision aids to be tested in the trial. Given the options of a videotape, a standard print brochure that was culturally aimed at African Americans, a tailored brochure, or telephone counseling that was culturally aimed at African Americans, the focus group participants preferred the video and standard brochure, she said.

Randomized Trial

Next spring, a randomized trial of the decision aids will include 400 participants ages 40-70. The study will assess three primary outcomes: general knowledge about prostate cancer screening, including its advantages and disadvantages; men's satisfaction with their decision to undergo screening or not; and the actual screening decision chosen. One study group will read the print brochure only; a second group will watch the video and read the print brochure; and a third group will participate in a discussion after reading the brochure and watching the video.

A larger question is whether decision aids have an impact on an individual's later compliance with their choices and subsequent quality of life, O'Connor said. Few studies have examined such downstream effects of the aided decisions, such as regret with the choice, she said.

"The early studies look promising in showing that decision aids improve decision making, but more trials are needed with other decisions, and looking at effects on persistence of choice and quality of life," O'Connor said.



             
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