An associate professor in the University of Virginia’s School of Nursing is using a $2.2 million grant from the National Institutes of Health to help prostate cancer patients make more informed decisions about their care.
Randy Jones said a prostate cancer diagnosis brings many questions: Is incontinence inevitable? Will out-of-pocket costs crush me? Will sex ever be an option again? For some patients, even knowing what questions to ask is difficult.
What they lack, he said, 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 creating a new tool to help patients and their loved ones better weigh risks, benefits and potential side effects so they aren’t plagued by regret.
“Often, we hear patients say, ‘I wish I could’ve done things differently’ or ‘I wouldn’t have stayed on chemo if I’d known about these side effects,’” Jones said. “Others say they felt pressured by their health care provider to pursue aggressive treatments, or didn’t want to let others down by giving into cancer, and pushed on for a little longer as a result,” ultimately regretting that choice.
Jones’ four-year, three-site study – which will include 158 interviews with subjects diagnosed with advanced prostate cancer at UVA’s Emily Couric Cancer Center, Virginia Commonwealth University’s Massey Cancer Center and Johns Hopkins University’s Sidney Kimmel Comprehensive Cancer Center – will test the effects of a novel decision aid delivered by tablet computer and administered by nurses. Half of the subjects – who will include 63 African-American, 94 Caucasian and one Asian man – will receive the decision aid; the other half will receive established protocols of care in the form of informational brochures and oral counsel with clinicians. Subjects and their decision partners – including spouses, partners, children and close family allies – will be queried about stress, pain and risk tolerance, their hopes for treatment and preferences related to quality of life versus longevity, if cancer remission is not achieved.
Jones’ ultimate aims are twofold: to determine whether patients who receive the decision aid experience less conflict, uncertainty and regret, achieving a greater quality of life; and whether their decision partners report less treatment regret and a higher quality of life.
Another aim is to better understand whether the decision aid impacts certain racial groups more, like African-Americans, who, Jones said, may be more likely than patients of other races to make decisions in conjunction with a family member. That’s important because African-American men are more than twice as likely as whites and Hispanics to be diagnosed with prostate cancer, but are less likely to be involved in active treatment decision-making.
About two-thirds of all prostate cancers are diagnosed in men age 65 and older. The American Cancer Society estimates that 161,310 new cases of prostate cancer will be diagnosed in 2017, and nearly 27,000 men will die from it. While one in 39 men diagnosed with prostate cancer will die of it, survivability is frequent; 2.9 million men diagnosed with prostate cancer are still alive.