Oliver Sartor: Hi, I'm Dr. Oliver Sartor. I'm medical director of the Tulane Cancer Center down in New Orleans and always a pleasure to be with Alicia Morgans, chief medical oncologist up at Dana-Farber. Hello, Alicia.

Alicia Morgans: Hi, Oliver. So nice to be here with you.

Oliver Sartor: You presented a really interesting dataset at ASCO GU in which you solicited, what 15,000 patients and had an idea about their patient journey. Give me a little background into that and then I'm going to ask you, how did you manage to do it and what did you find? But let's start off with just a little bit of background.

Alicia Morgans: Sure. Thanks. So, Oliver, I think you would agree that we, as clinicians, investigators, those who care for patients with prostate cancer, really are seeking ways to find the patient voice, the patient experience from the patient's own perspective. And we've tried to do that from clinical trial analyses and certainly by talking to patients in our own clinic.

But the team that I worked with, that worked with this group, Don't Be Patient, that was assembled across the UK, the US and Germany really sought to work with patient advocacy organizations, create a survey, and then deploy that survey within patients in these three countries to see if we could get a clearer picture of what life was like for a large group of men.

We recognized that we could not follow a single individual over the entire journey of an experience of prostate cancer, because at a minimum that typically takes years and at a maximum can take decades. So what we sought to do was get a large number of patients from across the spectrum of disease to try to get an understanding, almost like a flip book of lots of different portraits of what the experience is like from many different perspectives, receiving many different types of treatments and try to put it together to give us some overall context of the patient voice.

So to do this, we worked with this survey development group, as I mentioned, and the group worked again with patient advocacy organizations and worked with search engine optimization to put out this survey, which was an adaptive survey to the population of men in these countries to try to see if they would answer questions related to their care and their experience.

Ultimately, over 15,000 men completed what was on average an 83 question survey and really it only took 60 days to reach that amount of men. And had we left it open longer, we anticipate we could have had more, but that was really the point of saturation that we had initially designed for the survey deployment. So really I think from my perspective, very surprising that we were able to get such a group of patients, but at the same time, almost not surprising because I think these men really wanted their voices to be heard.

Oliver Sartor: That's exactly what I was thinking. When you get 15,000 people, they want to be heard. They want something to say. So what countries did you actually reach? And go a little more detail, if you don't mind, about the methods because I think it's fascinating. I mean, social media and the internet and people just responded?

Alicia Morgans: Sure. So the first step was really putting together a group to design the survey and really design the study strategy. This included a company that had designed a survey that was relatively similar for patients with breast cancer, to assess patients across that patient journey. The company is called Don't Be Patient and they work in qualitative research to design surveys to answer these types of questions.

There were a broad array of questions related to treatment, quality of life, social and demographic questions, clinical questions, and questions about patient experiences, expectations, ways that they engage with advocacy and support groups. And also questions about what their thoughts are in terms of expectations from treatment.

And we had representatives from the medical community from Germany, the UK and the US and I was privileged to be the US member, but this also included Joe O'Sullivan from the UK and Axel Heidenreich from Germany to lend our opinion to the development of that survey. We also had members of patient advocacy organizations from all three countries who also weighed in. Some of these individuals were also patients themselves, so could give that perspective as well as the advocacy perspective to try to ensure that we had balance across this survey.

So what we found was that there was relatively equal representation across all three countries and that there was a relatively even split between urban and rural and that the average age and disease burden actually seemed quite similar across the countries. So that was really, really exciting to see that we weren't just sampling a small group here or there. That it seemed actually pretty balanced across the board.

What we did find that I found particularly interesting in terms of diagnosis is that method of diagnosis did differ by country, at least among those patients who are answering the survey. For a majority of patients in the US and in Germany, the mode of diagnosis was routine screening by PSA, or it could be any screening, but I assume that that's what it was. The method of diagnosis in the UK, particularly among men with metastatic prostate cancer was most commonly through symptomatic presentation.

So about 75% of patients with metastatic disease in the UK presented with symptomatic disease. It was just under 50% who presented with symptomatic disease in the localized setting and about 42% in the UK with non-metastatic disease who presented via screening. So this was very different in the US and in Germany, as I mentioned, and just raises questions because I think we don't necessarily have solid, solid evidence that screening is associated with mortality.

Though those of us in the community who take care of people with prostate cancer feel strongly that it affects many outcomes in a positive way, but this certainly demonstrated that in countries where screening is relatively normal, or I guess not normal, routine it seems to be associated with diagnosis prior to symptomatic disease. And in other countries where policies may be different, symptomatic diagnosis is more common.

Oliver Sartor: Well now, when you were looking at these various geographies, are people satisfied with their care? Do they feel in England that maybe they're not getting as good a care as they should, or maybe in the US? We have very different systems between the US and Germany. So how did that patient satisfaction look?

Alicia Morgans: Well, I think that's also one of the most important findings in this study. No matter where you lived, whether you were diagnosed with metastatic disease or with localized disease or what your initial treatment was, for the most part patients felt satisfied. And I think that importantly, as we as physicians try to work to do what we can for patients within the system where we work, that's so important because we know that the doctors and the patients in all of these regions are simply trying to do their best. And it sounds like that's resulting in at least in patients being pretty satisfied with their care.

Oliver Sartor: Interesting data. Tell me briefly, where are you going to take this next? I mean, I'm amazed at the amount of data you've encountered over such a brief period of time. I can see all sorts of possibilities, but maybe scratch out a little bit of a vision where you take this next, Alicia.

Alicia Morgans: Well, thank you so much, Oliver. So there's a lot of data, as you might expect, given all those questions and all of those participants. So one of the first things that we're really going to delve into is trying to understand by country what the quality of life of different treatment approaches is and how patients have adapted or not adapted to those treatments.

We're also, of course, going to look into the ways that systems, healthcare systems really affect patient outcomes and try to understand how different approaches to providing care may lead to different levels of satisfaction or quality of life issues and how patients feel about that as well.

We're also trying to understand the way that patients engage or don't engage with advocacy organizations. As I said, there are advocacy groups who are involved in the development of the survey, and certainly from their perspective, understanding how patients do or don't engage with their organizations is critical as they try to reach as many patients in a positive way as possible. So these are just a few of the things that we're interested in, but certainly more to come.

Oliver Sartor: Terrific. We're going to be wrapping up, but any final words or anything else that you'd like to discuss before we say our goodbyes?

Alicia Morgans: Well, I'd just like to say that I'm so appreciative for these patients who completed this survey and for all patients who even took a look at it and thought about it, because really it takes us hearing those patients and certainly it takes them speaking so that we understand what we're doing and how we can do better. And I am just so excited that I feel that this is perhaps one step forward in our journey to try to do our best for our patients.

Oliver Sartor: I would certainly agree. Thank you very much, Alicia, for being here today. Interesting, phenomenal work. We're going to look forward to getting up updates over the years.

Alicia Morgans: Thank you so much, Dr. Sartor.