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Charles Ryan: Hello, I'm joined by my colleague, Alicia Morgans, Associate Professor of Medicine at Northwestern, who gave a great presentation at ASCO GU 2019 that really touched on an important issue, which is the integration of quality of life, patient-reported outcomes, and treatment decision-making in hormone-sensitive disease. Tell us a little bit about what you spoke about from the podium.

Alicia Morgans: Sure. Thank you. This is an issue that's really near and dear to my heart because I think that we think a lot in prostate cancer care about decision-making in localized disease. We have advocated for a long time, and there's actually a lot of research, on the use of shared decision-making specifically, because in that setting it's really important for physicians and patients to really work together to come to the right conclusions regarding which treatment is best because actually, the outcomes are probably similar in terms of efficacy at least in disease control when you're looking at things like a prostatectomy versus radiation. 

So, in settings where you have more than one treatment available, and they may vary by multiple aspects, whether that's finances or the drug delivery mechanism or the type of treatments, but their efficacy is presumed to be relatively similar, we can think about sharing that decision with patients. That's really kind of how we started the conversation and understanding how decisions might be best made. 

Then, I more specifically talked about how we think about quality of life in that decision-making process. Because, again, as physicians, we often think about efficacy and sometimes we think about, and often we think about actually, toxicity, but quality of life is a more, it's definitely a more nuanced and actually larger construct than just toxicity. I talked about how toxicity by the CTCAE criteria or the normal complications of therapy that we look at, can be augmented to include things like patient-reported outcomes and other factors to really more comprehensively understand what that person's quality of life might be.

Charles Ryan: So, is quality of life an attribute of a therapy? Is it an attribute of a patient, or is it an attribute of a disease?

Alicia Morgans: A great question that I would answer by saying it's probably a compilation of all of these things. Your quality of life would be your experience, which is probably your own perception, and then the interaction of your perceived experience with the actuality of your disease and the treatment. Some of those inputs also probably include things like your interactions with your family and your job and your stress level, and all those other things. But those all kind of come together to be really summarized as the patient's perception, the disease, and the treatment.

Charles Ryan: Yeah. When you begin to scratch the surface on this sometimes vague concept of quality of life, there's really a lot of depth to what could be studied because we could explore the psychic state of the patient, the psychological state of the patient and his reaction to the treatment. One of the things we don't talk about is the influence of the physician, the treating physician, on quality of life, right?

Alicia Morgans: Yeah.

Charles Ryan: Does the way that the physician presents the case around what are the expectations of treatment and the goals of care and how are we going to manage symptoms, that probably impacts the patient's quality of life and that's a measurable variable. I think, at least in my training and other times, you always thought of quality of life as this sort of data that came out a year after the efficacy data came out from the study, and it was very academic and it wasn't something that you did outside of clinical trials. But, really, what you're helping to lead is this idea that quality of life is something that we should all be doing, quality of life assessment, patient-reported outcomes are something that we should all be doing, and actually, it's not that hard to do in the standard clinical setting.

Alicia Morgans: Yeah. I would agree. I think we do try to do some of this. We all at least think about review of systems, for example, but if you do that in a systematic way and you do it routinely with every visit, you can actually capture, at least in some datasets, up to 50% more complications than if you don't do it in a systematic way, essentially. The other thing that I would remind us all to think about is what I call in the talk, at least, the X Factor, which are the other things that patients bring to the table and the other questions that are in the back of their minds that we don't, we certainly don't assess in a systematic way and sometimes we hear about from a roundabout way. 

The MA will come in and say, "The patient's really worried about his copay," or they're 20 minutes late but that's because they have to ride the bus and there's lots of connections and there's bad weather. Patients think about these things, like, how many visits am I going to have on this therapy and how intensive is the follow-up and what lab work is required and what's the mode of administration? How am I going to be impaired? Can I still take care of my family? Can I still work? These are just as important to patients as, is this drug going to work and for how long? 

Our group actually asked patients in a survey about what they think about, and the number one thing most consistently was, will I be able to feel well enough to spend time with my family? And efficacy really wasn't in that list. So I think it's important for us as we support patients in these decisions and we think about what their lives are like between clinic visits and not just while they're sitting there with us, to really engage some of these other factors. 

Charles Ryan: Right. Right. I really love the idea of this X Factor, but really what you're saying is that there are intangible factors that drive quality of life. The danger with calling them intangible factors or X Factors, if you will, is that it implies that we'll never be able to measure them, but you just touched on some things that are very measurable. 

Alicia Morgans: Yes.

Charles Ryan: How far do you live from the clinic? How long did you wait in the waiting room? Do you have a family member with you today? What's your copay? Those are yes/no discrete variables that we can measure.

Alicia Morgans: Yes. These are very measurable, very measurable. 

Charles Ryan: So you've got a lot of work ahead of you because I think the treatment community, the physicians, those of us who treat this disease and all cancers really, need to be able to figure out a way to efficiently, discretely, and meaningfully evaluate these X Factors, these tangible factors, and integrate them into our decision-making either in a formulaic way or just sort of an empiric way in terms of knowing who's the right patient, what's the right treatment for a patient at any given time. 

Alicia Morgans: Absolutely, and that starts with asking the patient. 

Charles Ryan: Right. What is it that they want to get out of that treatment? That was actually fascinating. You pointed out that when patients were surveyed, efficacy was not their main concern always when presented with different therapies. It's will I be able to work? 

Alicia Morgans: I think we talked before. I had a study on metastatic patients looking at what did they actually expect from the treatment, and about a third of them said it was at least a little likely that they could be cured with their systemic therapy for their metastatic disease. That's a red flag because in other cancer populations people are willing to accept things like chemotherapy or potentially even more toxic interventions for even a 1% chance of cure, and I would say a little likely is at least 1%. 

So, when patients are making these decisions under duress, because it is a very stressful situation, we don't want them to make decisions that are really inconsistent with their preferences and their wishes because of things that they hope for but that we realize are probably not going to be possible. At the end of the day, I just want all of us to engage with our patients, communicate, not necessarily talk longer, just talk more effectively and bring some of these other issues into the conversation because that's how we're going to make treatment decisions that are actually right for the patient.

Charles Ryan: Well, congratulations on a great presentation, great work. You're a much needed voice on this topic in our field, and it's also a pleasure to talk to you.

Alicia Morgans: Thank you. You too.