Making Informed Choices
Decisions about healthcare aren’t easy to make.
“For many patients, even knowing what questions to ask is difficult,” says associate professor of nursing Randy Jones (BSN ’00, MSN ’02, PhD ’05). “What they lack is a measured way to personally assess their own circumstances—a method to consider their priorities and make treatment decisions with their eyes wide open.”
Jones is using a $2.2 million grant from the National Institutes of Health to develop and evaluate a decision aid, delivered by tablet computer and administered by nurses and community patient navigators, for patients facing a prostate cancer diagnosis.
Today, one in seven American men is diagnosed with prostate cancer. The tool will help patients and their loved ones better weigh risks, benefits, and potential side effects.
“Often, we hear patients say, ‘I wish I could have done things differently,’” explains Jones, “or, ‘I wouldn’t have stayed on chemo if I’d known about these side effects.’ Others say they felt pressured by their healthcare providers to pursue aggressive treatments, or didn’t want to let others down by giving in to cancer, and pushed on for longer than they wished as a result.”
Jones’s four-year, three-site study will include 158 subjects diagnosed with advanced prostate cancer along with their decision-making partners at UVA Cancer Center, Virginia Commonwealth University’s Massey Cancer Center, and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University.
He will then test the effects of the decision aid in a study to include 63 African American men, 94 Caucasian men, and one Asian man. Half of the participants will receive the decision aid, while the other half will receive established protocols of care, such as informational brochures and one-on-one counseling with clinicians. Subjects will be asked about stress, pain and risk tolerance, their hopes for treatment, and preferences related to quality of life.
Jones has two chief aims: determine whether patients who receive the decision aid achieve a better quality of life with less internal conflict, uncertainty, and regret; and, second, evaluate whether the decision-making partners of patients report a more positive experience and less treatment regret.
He also hopes to better understand whether the decision aid has a greater impact on certain racial groups, like African Americans, who, Jones says, may be more likely than patients of other races to make decisions in conjunction with a family member. That’s an important question, because African American men are more than twice as likely as Caucasians and Hispanics to be diagnosed with prostate cancer, but are less likely to be involved in active decision making regarding treatment options.
Conclusions from Jones’s findings may lead to the development of additional computer tablet aids for patients facing complex healthcare decisions.
