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Do You Understand?

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A new study published in the journal Cancer shows that cancer patients enrolled in early clinical trials may not always understand the purpose or potential risks and benefits of their participation, reports Reuters. It's well known that some patients confuse research for medical care, says one of the study's authors, but this new study shows that patients don't fully understand the added risk of participating in clinical trials and that they may be too optimistic. In surveying 95 patients, the team found that only 31 people correctly identified the purpose of the research, Reuters says. In addition, 89 people of the 95 surveyed estimated risks and benefits incorrectly. "We know that many research trial participants are optimistic that they will do better than most people on trial. But we found a significant minority who expected to do worse but still participated in the trial. We don't have an explanation for this," lead author Rebecca Pentz tells Reuters.

At blog.bioethics.net, however, Summer McGee questions why optimism is considered a bad thing. "That blasted hopefulness is clouding people's understanding of research risk and benefit. How horrible!" McGee exclaims, then adds, "Seriously, is having hope such a bad thing? So it means that 2/3rds of the participants studied weren't entirely clear as to the purpose of the study. They equivocated on whether they were a patient vs. participant. They weren't sure whether their drug regimen was tailored to them or a standard protocol." But this isn't any different from the level of general comprehension that cancer patients have about their care, McGee says, especially considering how complicated some treatment regimens are. "The study is right to point out that these are people going through a traumatic time in their lives," she adds. "So perhaps they aren't as focused on the informed consent form rhetoric because they are fighting for their lives. Go figure."

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