“The decision about whether to be screened for prostate cancer should be an individual one.”
So declared the U.S. Preventive Services Task Force in April, marking a notable shift from its previous thinking. Back in 2012, the task force declared that men should not be screened routinely because the potential harms outweigh the possible benefits. As we discussed in a Capitol Hill briefing on June 28 with Rep. Donald Payne Jr. (D-N.J.), co-chair of the Congressional Men’s Health Caucus, we commend the Task Force panel for framing their latest statement in such a patient-centered way.
As a prostate cancer survivor and a urologist who have teamed up to advance research on this disease, we support this stance that men “deserve to be aware of what the science says so they can make the best choice for themselves” about screening. That’s true for treatment as well.
When patients learn that they have prostate cancer, it comes as a shock. They find themselves having to make serious decisions about treatment while hearing a language they don’t speak, with references to prostate-specific antigen levels, Gleason scores and other medical jargon. Even someone like an engineer well-versed in analytical thinking can find himself facing a tough choice that seems to involve a lot of variables and undefined outcomes.
Until recently, physicians had some information about the rates of side effects and effects associated with the different treatment options to share with patients. Unfortunately, it wasn’t as much as anyone needed to feel fully confident that each man was making the best choice for himself.
Fortunately, we were able to work together on a research study that will dramatically improve men’s ability to match their prostate cancer treatment decisions with their personal priorities and preferences.
We recently published new evidence on the rates of side effects and effects on quality of life associated with surgery, radiation, and active surveillance. Our study was published in the March 21 issue of JAMA, and was made possible with support from the nation’s newest health research funder, the Patient-Centered Outcomes Research Institute.
PCORI funds comparative effectiveness research, which answers questions about which tests and treatments work best for which kinds of patients. Such comparative research provides information that’s vital to the shared decision making called for by the USPSTF panel.
Our study looked at a broader range of men of different backgrounds and racial and ethnic groups seen in a greater variety of settings than the previous research. It also included updated information on the newest types of treatment, such as robotic surgery and image-guided radiation, as well as active surveillance, so it provides current and “real-world” information on the comparable outcomes associated with all these options. Often, clinicians rely on information from high-volume centers that don’t reflect the general experience.
Having people who have lived experience with a disease engaged in studies alongside scientists helps ensure that the research focuses on the outcomes that are most important to patients. That’s what “patient-centered outcomes research” means.
Policymakers are increasingly calling for health care to be patient-centered and for people to have greater say in decisions about their care. The USPSTF recommendation echoes this thinking.
To be truly empowered health care decision makers, we need to have information about how our different care options stack up. Thankfully, patient-centered research is enabling men to be empowered decision makers when it comes to prostate cancer.
Ralph Conwill is a prostate cancer survivor and a patient advocate at the Vanderbilt-Ingram Cancer Center in Nashville, Tenn. David Penson is professor and chair of the department of urologic surgery at Vanderbilt University.
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