Online information linked to PCa treatment regret

Men who use the Internet as their primary source for prostate cancer treatment decision-making are more likely to regret those decisions a year after treatment than those whose primary sources of information are radiation oncologists or urologists.

That finding is based on a new study of men with favorable-risk prostate cancer who were treated with radiation therapy. The results were presented at the Genitourinary Cancers Symposium in Orlando, FL.

Lead author Narek Shaverdian, MD, told Urology Times the findings suggest radiation oncologists, urologists, and other providers should be proactive about counseling these patients to help ensure they base their decisions on reliable information.

Read: Most men prefer informed decision-making for PCa

“We know that prostate cancer patients have a difficult task of choosing the treatment, especially patients that have favorable-risk [disease]. Even in radiation, there are multiple options. We also know that patients have multiple sources that they get information from: physicians, family members, friends, and the Internet,” said Dr. Shaverdian, resident physician in radiation oncology at UCLA, who worked on the study with Christopher R. King, MD, PhD, and colleagues.

“Since these patients with favorable-risk prostate cancer are known to live a long time, looking at how patients get information that influences their decisions is important. That’s especially since the toxicities of treatments are real, and these patients live with the toxicities.”

Previous research has shown that while physicians are an important source of information for their patients, a majority of oncology patients turn to the Internet-websites, online publications, blogs, and forums-for health information, according to Dr. Shaverdian.

This study reflects responses from 276 men treated with radiation, who were surveyed about which source was most important in their decision making. The source options: radiation oncologist, urologist, family members, other patients, the Internet, and other.

“We wanted to see if we could link that source to patients’ quality of life after treatment,” he said. “Regret is a validated outcome in prostate cancer that has been well studied. It has been associated with post-treatment quality of life and well-being.”

Men in the study were eligible for active surveillance and were at least a year out from stereotactic body radiotherapy, intensity-modulated radiation therapy, or high dose-rate brachytherapy. None of the patients had received androgen deprivation therapy.

Next: 13% rate of decision regret observed

13% rate of decision regret observed

Researchers found the overall rate of treatment decision regret was 13%. But when they dug deeper into how men arrived at those decisions, they found treatment regret among 7% of men who said radiation oncologists were their primary information source, 10% who indicated their urologist was the primary source, and 43% whose main source of information was the Internet. Other patients, family, and friends made up only 13% of the sample.

Dr. Shaverdian and colleagues then did a multivariable analysis looking at other factors that might impact patients’ regret, including treatment type, race, age, marital status, and more.

The Internet still came out on top as being the factor contributing to the most regret.

“Patients who said that the Internet versus the radiation oncologists was their primary source of information were 46 times more likely to have regret for their treatment,” he said.

Also see: How to estimate life expectancy in men with localized prostate Ca

In another aspect of the research, which wasn’t presented at the symposium, researchers asked patients about their primary factors for receiving treatment. Thirty-seven percent of men said the most important factor was having the highest chance of cure; 27% said they wanted the least side effects; and 16% said they wanted the most medically advanced treatment.

“We found that the men who chose the Internet for treatment decision-making as a primary source were most likely to select that the most important factor was receiving the least side effects,” Dr. Shaverdian said. “Physicians need to be aware that patients may come in with these unrealistic toxicity expectations that have been reinforced by some [low-quality] Internet sources. Physicians have to be proactive in their counseling. They need to know that patients may have formed an opinion, and that opinion may be based off of incorrect information.”

The next step in the research is to classify Internet sources, according to Dr. Shaverdian.

“I think the next step is to find out what sources are problematic to patients and also ways to steer patients that are making decisions to the better websites,” he said.

One of Dr. Shaverdian’s co-authors has an employment/leadership role and has stock and other ownership interests in Varian Medical Systems, and another co-author has received honoraria from ViewRay.