Challenges in Transitioning Men from Active Surveillance to Watchful Waiting - Lisa Lowenstein
October 30, 2024
Zachary Klaassen speaks with Lisa Lowenstein about transitioning men from active surveillance to watchful waiting in prostate cancer management. Dr. Lowenstein shares insights from her research on patient and clinician perspectives, highlighting the challenges of convincing men to reduce their monitoring intensity. She describes developing a shared decision-making intervention to help guide these conversations, addressing knowledge gaps and patient anxiety about reducing surveillance. The discussion reveals how patients often resist transitioning due to fear of missing cancer progression, while clinicians recognize their desire for continued reassurance. Dr. Lowenstein emphasizes the importance of considering the whole patient beyond their cancer, including their daily life and goals, rather than focusing solely on life expectancy. They explore how shared decision-making can help balance clinical expertise with patient values, leading to more personalized care decisions that respect both medical needs and patient preferences.
Biographies:
Lisa Lowenstein, PhD, MPH, RD, Associate Professor, Department of Health Services Research, Division of Cancer Prevention and Population Sciences, The University of Texas, MD Anderson Cancer Center, Houston, TX
Zachary Klaassen, MD, MSc, Urologic Oncologist, Assistant Professor Surgery/Urology at the Medical College of Georgia at Augusta University, Wellstar MCG, Georgia Cancer Center, Augusta, GA
Biographies:
Lisa Lowenstein, PhD, MPH, RD, Associate Professor, Department of Health Services Research, Division of Cancer Prevention and Population Sciences, The University of Texas, MD Anderson Cancer Center, Houston, TX
Zachary Klaassen, MD, MSc, Urologic Oncologist, Assistant Professor Surgery/Urology at the Medical College of Georgia at Augusta University, Wellstar MCG, Georgia Cancer Center, Augusta, GA
Related Content:
SCS AUA 2024: Transitioning Men to Watchful Waiting
2024 NCCN Guidelines: Simplifying the Management of Very Low-Risk Prostate Cancer - Rashid Sayyid & Zachary Klaassen
AUA 2024: Genomic Signatures Associated with Adverse Pathologic Features at Radical Prostatectomy Among Active Surveillance Eligible Men
SCS AUA 2024: Transitioning Men to Watchful Waiting
2024 NCCN Guidelines: Simplifying the Management of Very Low-Risk Prostate Cancer - Rashid Sayyid & Zachary Klaassen
AUA 2024: Genomic Signatures Associated with Adverse Pathologic Features at Radical Prostatectomy Among Active Surveillance Eligible Men
Read the Full Video Transcript
Zachary Klaassen: Hi, my name is Zach Klaassen. I'm a urologic oncologist at the Georgia Cancer Center. I'm delighted to be joined on UroToday by Dr. Lisa Lowenstein, who's Associate Professor in the Department of Health Services Research at the University of Texas MD Anderson Cancer Center. Today we're discussing a presentation at the AUA South Central meeting discussing a very important topic, Transitioning Men to Watchful Waiting for prostate cancer. Lisa, thank you so much for joining us on UroToday.
Lisa Lowenstein: Thank you for having me. It's a pleasure. I'll just jump right in. So thank you all for having me and talking about this really important topic. It's about transitioning men to watchful waiting when they're on active surveillance.
So I kind of wanted to throw up some guidelines here for us to kind of quickly review. I won't go into too much detail. But you see, there is variation from these larger organizations regarding life expectancy. So we see two for less than five years. We see two for less than 10 years, as to when men should be put on active surveillance.
And then there's some guidance around follow-up plan. But I think the take-home message here is that it needs to be highly individualized and tailored for your patient. And then we started looking into the question of what do these guidelines say about transitioning men to watchful waiting? And again, it's not very clear. And there's a lot of talk about life expectancies. There's a lot of talk about comorbidities. And what I don't show here is that there is a lot of talk of frailty assessment and shared decision-making. Because as you know, many of the men on active surveillance and watchful waiting tend to be a little bit on the older side.
And so what I did is, I talked to some patients and really asked them a question, "Would you ever consider stopping AS?" These are kind of the responses that I got, right? So the underlying quote here is, "My thought is if I develop these symptoms, that could be an extreme form of prostate cancer. So, I could be shooting myself in the foot by not pursuing monitoring." And then this gentleman said, "I don't understand your question." He just looked at me like, "That question doesn't make sense. What are you talking about?" And that's kind of the... The question is like when we leaned into the de-escalation part, which I'll talk about a little bit later, that the conversation was a little bit more open. They're a little bit more willing to discuss that.
And then we talked to clinicians. And to all of you, this is probably not a surprise for many of you who see these patients. And here, this is a clinician who's been practicing for 25 years, and he's just saying like, most people don't want to be kicked out of the clinic. They want to keep on coming back. They want to say hi. They want to say, "How am I doing? Am I looking good, doc?" The doc says, "You're looking terrific." And they're like, "All right, great. See you again next year." And that's usually the pattern.
And then this doc, I think really hit the nail on the head, and really resonated with what I was hearing with the patients, is that they just want to keep watching because they feel like you just never know. It's this whole concept of anticipatory regret. We don't want to regret for not doing something. And I think that's where a lot of these men are, and the clinicians clearly recognize this.
And so what we did is, we developed shared decision-making interventions to really help guide these conversations, to educate the patients about this. Because something that came out in some of these interviews, one, the men actually didn't understand active surveillance consistently. They didn't understand what a Gleason score was. There was just some consistent sense and gap of knowledge. And this persistent, not anxiety, but just kind of this persistent nagging at the back of their head like, what if?
And so, our goal was to provide some education, provide some risk communication strategy. Saying like, "It's okay." Kind of like, "Don't worry, it'll be okay." If we can maybe back off. And maybe just slightly open the door and maybe not say we're going to stop all monitoring, but say, "Maybe we'll drop this test. Maybe we'll drop that test. Maybe we'll space it out." And part of this shared decision-making is, we elicit their values. And I got a lot of the values from the interviews I did with the patients informed by the clinicians. And we also did preferences.
So what we did is to test our decision aid, and we found that it did improve knowledge of active surveillance for prostate cancer. And we did develop that measure in-house. And then we used your typical anxiety score that you use for prostate cancer. Again, we're not seeing much movement there, which I didn't expect. And then we did see improvement in decisional conflict. So patients were a little bit less, they were more certain of their decision, whatever that may be. They felt more informed about their choice. They felt like they were clearer on their values. And they felt like they had a little bit more support to make the decision that was right for them.
And this is, we did a patient social matching exercise, where we threw up some quotations, and these were the types of patients I saw in the interviews. This one patient said, "I am open to the patient decreasing to yearly PSA testing because I'm confident that their cancer is stable," and probably should reword this. But here you see, not a lot of patients selected this, but we did hear this from a small number of patients. This patient wanted to stop doing biopsies, but keep all the other tests. Just to give them that reassurance that their cancer is not getting worse. So we're seeing a little bit more patients choosing this, both in the post-test and pre-test. And same thing. This one is where a lot of the patients chose. They want to continue their testing. And with routine biopsies, MRI, digital rectal exam and PSA tests, to really give them that peace of mind. And I think that peace of mind is what's really sticking for the patients.
And so, that all being said, transitioning men to watchful waiting entirely may not be an easy pathway. But, I think with continued conversations, and really having a thoughtful conversation about where are you with your life? Where are you with your health? Because when you talk about life expectancy with patients, they shut down. Because they're like, "Oh, you're going to the death panel with me. I'm not going to die." A lot of these men feel like they're fit, they're active. Or maybe they're not, but they want to see themselves as such. And so it's hard to have those conversations about how your health is really doing. What are your comorbidities? How much does that get in the way? And now there's data showing that the risk of mortality from non-prostate cancer is higher, even for men who may progress and get graded up.
So again, transitioning to watchful waiting may be the right decision, but is it one that aligns with the patient's values? And because the data isn't so clear, that's why shared decision-making is so important. For one, we want them to make an informed decision. We want them to feel confident in their decision. And we want them to feel supported in their decision by their clinical team. And I thank you all for this, your attention.
Zachary Klaassen: That was great. I think there's so many jumping off points we could discuss. I have a couple that I'd like to pick your brain a little further. I think you're absolutely right. It's hard to talk about life expectancy. And when we walk in a room, we say, "Well, this guy, he doesn't look healthy. He's on oxygen. He's probably got less than 10 years." And so, should we transition that guy? Probably.
In your opinion, what's the main reason to transition men from active surveillance to watchful waiting? Just from a clinical perspective.
Lisa Lowenstein: I don't know if I can speak to the clinical perspective, but I can speak to the patient and care partner perspective. That is taking another thing off of their to-do list.
Zachary Klaassen: Right.
Lisa Lowenstein: And I think that's really important to hammer home, because even with one of our participants, they had just been hospitalized a month before. They participated in the study. And he had a heart attack, and he was like, "Oh, I wanted to make it back to the doctor, because I wanted to get my tests done. I needed to know how my prostate cancer is doing."
Zachary Klaassen: Right.
Lisa Lowenstein: So even in the face of heart attack, they still want to be tested. So from a patient perspective and their values, I think it's really on the clinicians to drive home the clinical aspect, but not so much that you lose a person.
Zachary Klaassen: Right. That's a great answer. I think the thing off their to-do list is a great way of putting that.
You mentioned the importance of shared decision-making, and we use it all the time in the clinic, and this is an absolute textbook example of shared decision-making. Just reiterate again, I think, and you brought up a good point. They just sometimes want to see us once a year. We've known these patients for 10 years. Is there an aspect of still seeing them but not testing them, asking how their symptoms are? How does that factor in? And just reiterate the importance of shared decision-making.
Lisa Lowenstein: I think the shared decision-making allows everybody to contribute their level of expertise from their perspective. The patient is an expert on their health, their values, and their preferences. Their care partner, caregiver, is an expert on their experience and what they're seeing with the patient and their loved one. And the clinician, you're an expert on the cancer. You're an expert on the tumor, on the biomarkers, the genetics, all of that. And with that all combined together, and with real nice soft open dialogue, I think you can come to a really nice medium ground that is the right choice at that time.
Zachary Klaassen: And it's important to evaluate at every visit, right?
Lisa Lowenstein: Yeah.
Zachary Klaassen: I mean, this is not a static situation.
Lisa Lowenstein: Not static.
Zachary Klaassen: Yeah. No, absolutely. Congratulations on this great work. This is such a good topic, and it's important. It's great for our listeners for you to share your expertise. Maybe just a couple of take-home messages for our listeners.
Lisa Lowenstein: Take-home messages. Obviously, pay attention to your clinical parameters, but really look at the patient as a person beyond the prostate cancer. So look at their comorbidities. Look at what they enjoy doing every day. Look at what their daily life is. And look at what they want to accomplish the next five years or three years, or maybe even 10 years. We just don't know anymore, because people age very differently.
Zachary Klaassen: Yeah, that's right. Absolutely. Well, thanks again for taking some time out of your schedule to join us on UroToday, and sharing this important work.
Lisa Lowenstein: Thank you.
Zachary Klaassen: Hi, my name is Zach Klaassen. I'm a urologic oncologist at the Georgia Cancer Center. I'm delighted to be joined on UroToday by Dr. Lisa Lowenstein, who's Associate Professor in the Department of Health Services Research at the University of Texas MD Anderson Cancer Center. Today we're discussing a presentation at the AUA South Central meeting discussing a very important topic, Transitioning Men to Watchful Waiting for prostate cancer. Lisa, thank you so much for joining us on UroToday.
Lisa Lowenstein: Thank you for having me. It's a pleasure. I'll just jump right in. So thank you all for having me and talking about this really important topic. It's about transitioning men to watchful waiting when they're on active surveillance.
So I kind of wanted to throw up some guidelines here for us to kind of quickly review. I won't go into too much detail. But you see, there is variation from these larger organizations regarding life expectancy. So we see two for less than five years. We see two for less than 10 years, as to when men should be put on active surveillance.
And then there's some guidance around follow-up plan. But I think the take-home message here is that it needs to be highly individualized and tailored for your patient. And then we started looking into the question of what do these guidelines say about transitioning men to watchful waiting? And again, it's not very clear. And there's a lot of talk about life expectancies. There's a lot of talk about comorbidities. And what I don't show here is that there is a lot of talk of frailty assessment and shared decision-making. Because as you know, many of the men on active surveillance and watchful waiting tend to be a little bit on the older side.
And so what I did is, I talked to some patients and really asked them a question, "Would you ever consider stopping AS?" These are kind of the responses that I got, right? So the underlying quote here is, "My thought is if I develop these symptoms, that could be an extreme form of prostate cancer. So, I could be shooting myself in the foot by not pursuing monitoring." And then this gentleman said, "I don't understand your question." He just looked at me like, "That question doesn't make sense. What are you talking about?" And that's kind of the... The question is like when we leaned into the de-escalation part, which I'll talk about a little bit later, that the conversation was a little bit more open. They're a little bit more willing to discuss that.
And then we talked to clinicians. And to all of you, this is probably not a surprise for many of you who see these patients. And here, this is a clinician who's been practicing for 25 years, and he's just saying like, most people don't want to be kicked out of the clinic. They want to keep on coming back. They want to say hi. They want to say, "How am I doing? Am I looking good, doc?" The doc says, "You're looking terrific." And they're like, "All right, great. See you again next year." And that's usually the pattern.
And then this doc, I think really hit the nail on the head, and really resonated with what I was hearing with the patients, is that they just want to keep watching because they feel like you just never know. It's this whole concept of anticipatory regret. We don't want to regret for not doing something. And I think that's where a lot of these men are, and the clinicians clearly recognize this.
And so what we did is, we developed shared decision-making interventions to really help guide these conversations, to educate the patients about this. Because something that came out in some of these interviews, one, the men actually didn't understand active surveillance consistently. They didn't understand what a Gleason score was. There was just some consistent sense and gap of knowledge. And this persistent, not anxiety, but just kind of this persistent nagging at the back of their head like, what if?
And so, our goal was to provide some education, provide some risk communication strategy. Saying like, "It's okay." Kind of like, "Don't worry, it'll be okay." If we can maybe back off. And maybe just slightly open the door and maybe not say we're going to stop all monitoring, but say, "Maybe we'll drop this test. Maybe we'll drop that test. Maybe we'll space it out." And part of this shared decision-making is, we elicit their values. And I got a lot of the values from the interviews I did with the patients informed by the clinicians. And we also did preferences.
So what we did is to test our decision aid, and we found that it did improve knowledge of active surveillance for prostate cancer. And we did develop that measure in-house. And then we used your typical anxiety score that you use for prostate cancer. Again, we're not seeing much movement there, which I didn't expect. And then we did see improvement in decisional conflict. So patients were a little bit less, they were more certain of their decision, whatever that may be. They felt more informed about their choice. They felt like they were clearer on their values. And they felt like they had a little bit more support to make the decision that was right for them.
And this is, we did a patient social matching exercise, where we threw up some quotations, and these were the types of patients I saw in the interviews. This one patient said, "I am open to the patient decreasing to yearly PSA testing because I'm confident that their cancer is stable," and probably should reword this. But here you see, not a lot of patients selected this, but we did hear this from a small number of patients. This patient wanted to stop doing biopsies, but keep all the other tests. Just to give them that reassurance that their cancer is not getting worse. So we're seeing a little bit more patients choosing this, both in the post-test and pre-test. And same thing. This one is where a lot of the patients chose. They want to continue their testing. And with routine biopsies, MRI, digital rectal exam and PSA tests, to really give them that peace of mind. And I think that peace of mind is what's really sticking for the patients.
And so, that all being said, transitioning men to watchful waiting entirely may not be an easy pathway. But, I think with continued conversations, and really having a thoughtful conversation about where are you with your life? Where are you with your health? Because when you talk about life expectancy with patients, they shut down. Because they're like, "Oh, you're going to the death panel with me. I'm not going to die." A lot of these men feel like they're fit, they're active. Or maybe they're not, but they want to see themselves as such. And so it's hard to have those conversations about how your health is really doing. What are your comorbidities? How much does that get in the way? And now there's data showing that the risk of mortality from non-prostate cancer is higher, even for men who may progress and get graded up.
So again, transitioning to watchful waiting may be the right decision, but is it one that aligns with the patient's values? And because the data isn't so clear, that's why shared decision-making is so important. For one, we want them to make an informed decision. We want them to feel confident in their decision. And we want them to feel supported in their decision by their clinical team. And I thank you all for this, your attention.
Zachary Klaassen: That was great. I think there's so many jumping off points we could discuss. I have a couple that I'd like to pick your brain a little further. I think you're absolutely right. It's hard to talk about life expectancy. And when we walk in a room, we say, "Well, this guy, he doesn't look healthy. He's on oxygen. He's probably got less than 10 years." And so, should we transition that guy? Probably.
In your opinion, what's the main reason to transition men from active surveillance to watchful waiting? Just from a clinical perspective.
Lisa Lowenstein: I don't know if I can speak to the clinical perspective, but I can speak to the patient and care partner perspective. That is taking another thing off of their to-do list.
Zachary Klaassen: Right.
Lisa Lowenstein: And I think that's really important to hammer home, because even with one of our participants, they had just been hospitalized a month before. They participated in the study. And he had a heart attack, and he was like, "Oh, I wanted to make it back to the doctor, because I wanted to get my tests done. I needed to know how my prostate cancer is doing."
Zachary Klaassen: Right.
Lisa Lowenstein: So even in the face of heart attack, they still want to be tested. So from a patient perspective and their values, I think it's really on the clinicians to drive home the clinical aspect, but not so much that you lose a person.
Zachary Klaassen: Right. That's a great answer. I think the thing off their to-do list is a great way of putting that.
You mentioned the importance of shared decision-making, and we use it all the time in the clinic, and this is an absolute textbook example of shared decision-making. Just reiterate again, I think, and you brought up a good point. They just sometimes want to see us once a year. We've known these patients for 10 years. Is there an aspect of still seeing them but not testing them, asking how their symptoms are? How does that factor in? And just reiterate the importance of shared decision-making.
Lisa Lowenstein: I think the shared decision-making allows everybody to contribute their level of expertise from their perspective. The patient is an expert on their health, their values, and their preferences. Their care partner, caregiver, is an expert on their experience and what they're seeing with the patient and their loved one. And the clinician, you're an expert on the cancer. You're an expert on the tumor, on the biomarkers, the genetics, all of that. And with that all combined together, and with real nice soft open dialogue, I think you can come to a really nice medium ground that is the right choice at that time.
Zachary Klaassen: And it's important to evaluate at every visit, right?
Lisa Lowenstein: Yeah.
Zachary Klaassen: I mean, this is not a static situation.
Lisa Lowenstein: Not static.
Zachary Klaassen: Yeah. No, absolutely. Congratulations on this great work. This is such a good topic, and it's important. It's great for our listeners for you to share your expertise. Maybe just a couple of take-home messages for our listeners.
Lisa Lowenstein: Take-home messages. Obviously, pay attention to your clinical parameters, but really look at the patient as a person beyond the prostate cancer. So look at their comorbidities. Look at what they enjoy doing every day. Look at what their daily life is. And look at what they want to accomplish the next five years or three years, or maybe even 10 years. We just don't know anymore, because people age very differently.
Zachary Klaassen: Yeah, that's right. Absolutely. Well, thanks again for taking some time out of your schedule to join us on UroToday, and sharing this important work.
Lisa Lowenstein: Thank you.