Mar 15, 2016


Interviewer: What cancer screening guidelines don't tell you, up next on The Scope.

Announcer: Examining the latest research, and telling you about the latest breakthroughs. The science and research show is on The Scope.

Interviewer: I'm talking with Dr. Angie Fagerlin, the Chair of Population Health Sciences at the University of Utah. Dr. Fagerlin, you recently published a study analyzing cancer screening guidelines. First of all, what are those? What are they meant to do?

Dr. Fagerlin: So let's take a common one: breast cancer screening. As you know, there's been a lot of controversy about when people should be screened. But different organizations have these screening guidelines that describe the risks and benefits associated with being screened. So for example, what are the benefits and risks of being screened between ages 40 and 50? What about between 50 and 74 or 75? What happens when you're older, 75 and older? So in each of these cases, they'll give . . . they should give, at least. As we find out later they don't always do so. They should give the risks and benefits of cancer screenings at different age periods.

Interviewer: And so when you looked through these different cancer screening guidelines, what did you find?

Dr. Fagerlin: In two-thirds of the cases, there were problems with it. So for example, in some cases, they only talked about the benefits of screening and didn't mention any of the harms that can be associated with the screening. In other cases, they didn't even mention what the benefit of screening is. They just assumed that the people would know what the benefits of screening are. So they didn't even bring that up. And in other cases, they presented the screening in a different way that can make it confusing. It would make the benefits seem much bigger, and the risks seem much harder because there's a way you can lie with statistics, make a screening program look better than maybe it is.

Interviewer: I can imagine what the benefits of screening are. They can catch a cancer early. But what are the risks?

Dr. Fagerlin: Well, every cancer has different risks, different cancer screenings. For example, in some cases, you can have a lot of false positives, which means that you'll be told you have cancer and you really don't. And that can be really anxiety provoking. I know I've talked to friends who had to sit there and wait for two to three weeks to figure out if they actually had cancer and it's just excruciating. But beyond that, it means that you can have extra tests that you know you wouldn't have needed. It can cause you to have maybe treatment for cancer that might not have, in the end, caused you any harm. Because it was such a slow growing cancer or small . . .

Interviewer: Why is it a problem that not all the information is there?

Dr. Fagerlin: Let me just give you a little story. So I'm in my early 40s and technically I'm a little at higher risk because my mom had breast cancer. And so I've been trying to think through all of this. And for me, I need to think about what the risks and benefits are for me and then talk to my doctor about that, and what kind of risks I'm willing to accept by not being screened, or the risk I will accept by being screened.

But I have another friend who has a huge family history and so I decided not to be screened at this point. But my friend, she had a lot of cancer in the early 30s and 40s in her family, and she's been screened. She and her doctor have had those conversations about what is best for her.

And so what is important, because there's so much variability about your family history, about your own health, by all these different kinds of things, is that these guidelines are supposed to tell us what are the risks of a false positive at different ages. What are the risks of being over-treated, and what are the benefits? How likely, if you get diagnosed, is it earlier or if you get screened, how likely is it to extend your life? How likely is it to prevent death from breast cancer?

And you really have to take that information and go and talk to your doctor about those risks and benefits, and how you feel about them, and then make the decision that is best for you. And that is what I think is really important about the guidelines, is that it should be a shared decision between patients and providers.

Interviewer: And something that you look at is how this information is presented and how the patient or physician is able to understand what that information really means.

Dr. Fagerlin: I think the most important way to present this information, because it is complicated, is to present it using what is called absolute risk presentation. So tell us how many people out of 100, or how many people out of 1,000 are going to benefit from this. And how many people out of 100 or 1,000 or whatever is preferred will be harmed. And compare those side by side.

There are ways to present it graphically, which can be really beneficial to some people. Because some people are visual learners, and some people are not. And so by presenting it in both ways, that can help. So you can use what are called pictographs or icon arrays, which are these matrices of pictures of, let's say, 100 women. And you would use different colors to show how many people would benefit from screening, for example. But I think people are becoming more and more aware of the importance of clearer communication.

And so I'm already seeing changes. Again, I'm not going to claim that that's because of us. Maybe a small part. But I think, I'm hoping that people create these guidelines see this article and take it to heart. Because I think people who are writing these guidelines, a lot of times, they spend so much time doing this. And they spend so much . . . it's a really hard job. I mean, the amount of data they have to comb through, and the analyses they have to do. I mean, they spent a lot of time and energy, and I know they want to present this in the best way.

And I don't think people were probably aware that this wasn't being presented in the best way. Because I think everybody's goal is to make this good recommendation for providers and patients. So I think this will probably be, now that it's out there, that this has not been done as well as everybody would hope. I think people will make changes because I think everyone is doing this for the right reasons.

Announcer: Interesting, informative, and all in the name of better health. This is The Scope Health Sciences Radio.

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