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Really honored to be joining you today. So, thank you so much for having me and uh representing zero prostate cancer in the prostate cancer community. Um and sharing the patient perspective and the patient voice. Um I'll be talking about patient insights, of course on advanced prostate cancer. And um first, I think and foremost, I wanna emphasize that advanced prostate cancer patients want more time and a high quality of life. Of course, you as providers are uh uh medical providers um are really focused on uh treatment and lengthening life and giving them um more time to meet those milestones. And of course, that's very important to them uh prostate cancer patients. But they also want a really high quality of life too. They wanna continue to um do the things that they love and enjoy. So the ability to continue to work and engage in hobbies and have an active lifestyle is uh if that's something they already do is important to them to continue to do that. Um But also they really wanna know about side effects and treatment, side effects and um what uh treatments or drugs may limit their side effects um that that they're interested in that and, and how those side effects can be managed. Um So that's really important to them uh to have a clear understanding of each treatment option and what side effects come alongside those treatments and how they can be managed. And then also emotional, there's a significant emotional and mental toll that um certainly advanced prostate cancer takes on patients and their families. Um So it's not um a secret really that they are at higher risk uh cancer patients in general, but especially advanced prostate cancer patients, they're at a higher risk of anxiety and depression and feeling isolated. Um Some of this is more common in men as they get older and they retire and they're feeling kind of a loss of maybe their work community and a loss of their um their work and their livelihood if that's the case. But that if that corresponds along with the prostate cancer do diagnosis that can compound the isolation that they feel and the sense of worth which can lead to uh depression and anxiety. And I'm not talking about just like the initial um stress and distress of learning about a cancer diagnosis, but I'm talking about like clinical depression a real um that it really impacts their livelihood. And so um please screen for these uh with advanced prostate cancer patients and be on the look out for it. Um But also it's well pretty well documented that prostate cancer patients also have a hi have a higher risk of suicide. Um So please be aware of that and, and ask them, um not just how they're doing but really kind of probe, uh ask some probing questions to really get a, a sense of what their anxiety, their depression, they're, they're really the state of their mental health is like. Um And then I also wanna talk about just how we can improve the patient experience, particularly from the the doctor and uh physician um perspective. So it's really important, you know, about shared decision making and the aspects of that. But I just wanna reiterate um that the importance of them understanding their treatment options and side effects is really important. And II really emphasize like ensure understanding, it's one thing to explain it. But I think studies have shown that patients get less than 50% walk away with less than 50% of the information that was conveyed to them in a medical appointment. So please make sure that, you know, they have an understanding of these treatment options and side effects. We did a large scale survey um about a year or two ago and we found that the top two things that patients said they wished they had um gotten from their uh initial appointments was more time to understand their treatment and the side effects. Those were the top two things that they felt like they, they could have been improved from their experience. Um ask about their lifestyle and their treatment goals and this kinda get back, gets back a little bit to the quality of life issue if they're really active, um, they wanna maintain that active level also just listen to their concerns. They want to feel like, um, they're being heard and respected. Um, so, so listen to their concerns and involve the caregiver, acknowledge the caregiver is there. They oftentimes they bring someone with them to the appointment with them. And that's really important because as they, that person, uh I wouldn't, you know, as physicians, please encourage them, maybe to bring somebody with them because that person can help take notes and then help them have an understanding. Uh You know, two heads are better than one basically, in this case. Um So involve the caregiver, acknowledge them, welcome them into the appointment and um cause they're often gonna be making treatment decisions together with their family. Um And, and you, so it's important to involve them as well. Uh connect them to support resources. They're, they often don't um any of those initial appointments don't have any idea of what's coming. Um They're, they're still in shock. Uh And so really, it's important to connect them to support resources and we at zero prostate cancer have a number of sr support resources that can help. We have over 100 and 50 uh support groups across the country. Some meet in person, many meet virtually that can meet their needs. Anywhere we have 1 to 1 peer support matching other organizations have um these resources as well. Support resources like support groups, many hospitals, local hospitals and uh cancer support groups have them as well. So it's really important to know that they know the support resources that are available to them and if they need it, then they, they can tap into those and then also coordinate their care with their other treatment providers. Um So they're often, you know, they may have a urologist, a radiation oncologist, a medical oncologist or primary care provider, maybe a physical therapist, you know, a pharmacist, like there's, there's a lot of people that, that are on the treatment team, you all know this, but as much as possible as you can communicate when it's necessary so that you're making this easier for them and more streamlined, uh that's really valuable to patients so that they feel that coordinated care and that their team is working together to best meet their needs. And then it's also important and I eluded this a little bit with a caregiver, but really this disease impacts their family and their relationships. Um It's no secret that uh especially with earlystage prostate cancer, if they did have their prostate removed or they had radiation, that there are likely going to be some um erectile dysfunction issues. Um incontinence, those can all play a role in intimacy and how they feel about themselves. But it also it, it impacts just how they're communicating with their partner and they're just um not feeling great about themselves often as a man. Um And so it's really important to understand that and to talk about that and those concerns um with patients and understanding that it is having an impact on their uh their sex life and um how they're feeling with their, you know, partner or partners. Um So really understand that and, and engage them in a conversation about that and how important it is to them that that continues. But um understand that that's, that's occurring and it's probably worse than they're saying it is. Um So that's another reason why support groups can be of great value or, or just peer support in general because so many prostate cancer patients have gone through this before. So it's really important for them to be able to talk to others who've gone through this and, and had similar experiences also with advanced prostate cancer and hormone therapies. Those um affect their libido oftentimes. So that's another thing that can really just wreak havoc on their, their intimate life. Um They're under a lot of stress as I've already covered. So, but, but that impacts, that is not just a patient that impacts their family and their relationship, it is really hard to see someone you love go through this. Um not just the difficult treatments but the side effects and the, the mental health um toll that it can take so that, that doesn't just play a role in for the patient. It's, it's their family as well and those who love them. And then there are significant financial concerns too with a um with a prostate cancer diagnosis treatment is really expensive. Um So that's impacting uh their, you know, their, their family as well. Just understand that and, and have resources in hand that can help them um get through that. So, so I just wanna emphasize that, you know, don't forget that you're not just dealing with the patient that really this is a, a disease that affects the certainly the caregiver as well and the and sometimes the broader family. So connect them to support resources um so that they can share them with their loved ones or if the caregiver is present in the appointments, acknowledge them and, and share resources that can be helpful for them. We have support groups that are available for care just for caregivers. So, um many other, you know, organizations have that as well. Immerman Angels is a good example that has peer to peer, mentor relationships. They offer that for caregivers too. So um all great things that can uh there's a lot of resources out there, just be sure that you're connecting, not only the patient but the family as well to those resources. Um And that's really the highlight of what I wanted to convey the patient experience, the family experience, the caregiver experience. Um I think a lot of, you know, this but it's one thing to um treat it just and, and talk to them the few minutes and their appointment. But really this is like compounded, this is what we hear over and over again from patients and their loved ones. So I just, I'm happy to share that experience, their experiences with you today um to help you uh meet their needs. Thanks Jeremy. Absolutely brilliant. Um I've actually got one more slide after this, which was thank you. So, uh but that, but that's OK just as long as we don't start with that one on the next one. Yeah. No. Yeah, that was, that was really good. That was really good and Absolutely. Yeah, exactly what we're looking for. So uh um really kind of um yeah, thinking about the whole person, which is great. So OK, good. Um I can OK, perfect. And you'll intro me again, you said just like we're Yeah, yeah, we can, we'll just keep the recording going but we'll um um what we'll do is we'll just kind of slice this um um and we'll be two separate recordings. OK. Um Just let me know when you're ready. Um OK. Yeah, let me go. Let me advance real quick just to remind me before I actually like, yeah, compare I see communication. So OK, I think so. Thank you. All right. Yeah. OK. Let me take one more drink and then no worries. All right. How long was that? Do you know? Um I don't know exactly but yeah, it was about 10 to 15. So perfect. Absolutely perfect. Cool. Are you uh you, you're good to go. Ok cool. Uh What I'm gonna do I'm just gonna turn my camera off again and I'll introduce you. Um what you did last time was perfect. So just give me a couple of seconds after I introduce you, so we can do a cut in the video and then the same at the end, just um smile and look at the camera for two or three seconds at the end just to give us a little bit of time. OK. Perfect. OK. Um So we're really excited to have Jeremy patch with us again and he is gonna be giving us um some insights um on what we've been discussing this evening on um patients perspectives on advanced prostate cancer. Jeremy. Thank you so much for having me. It is uh a pleasure to, to be joining you again, to talk about patient insights of those living with advanced prostate cancer and their loved ones. So I'm, I'm happy to be joining you today and, and sharing the patient experience again. Uh I wanted to talk about communication and the importance of it with both uh the patients and their caregivers who are often present in the appointment with them. It's really important to build trust from the beginning. So they um you know, I recently uh heard from a, from a caregiver who they had an initial consultation with the surgeon and kind of immediately knew it wasn't the best fit for them so they can kind of develop those quickly, um, those thoughts and feelings and, and uh so II just, I'm reiterating that it's really important to build trust from the beginning. You're not gonna be a great fit for everyone. But um they really want to, to be, feel like they're heard and valued. Um and their perspectives are valued and they're listened to. So, so build that trust um encourage them to bring somebody with them. Um They often do, they'll often bring a partner or a caregiver with them, perhaps an adult child friend, somebody. Uh but it's really important for, um and I mentioned this in the, in the last session, but patients often don't get what they're hearing. Um They're only retaining, you know, usually less than 50% of what they hear an appointment. So, and a lot of that is especially in the beginning, they're just, they're just shocked and they're kinda can't believe this is happening to them. So if they bring somebody with them, they can help take notes, help them process it later write down maybe medications that are mentioned, treatments, intermission, men side effect that are mentioned all of that information. Um so that they can later kind of process that together and then maybe form their questions and come back. So they have a full understanding of, of what's being recommended, um, be willing to work with other providers. That's really important. They want kind of Contin care often. So if they're, if they're meeting with others, um, they have other providers like a medical oncologist, a urologist, a radiation oncologist, work with them to streamline that care for them and offer to connect them to a second opinion. You should be encouraging them to get a second opinion. Um We encourage our, our patient community to ask for a second opinion to maybe see another specialist. Uh So, you know, it, it's really helpful, I think and it's part of building trust if you encourage that and welcome that. Um and don't feel threatened by that, that that can help them. Um I think, you know, feel more comfortable with you as, as a, as a provider for them and then ask about their interest in clinical trials and I'll get to that a little later, but that's really important that they uh are asked and um understand that that might be an option for them. And I talked some about shared decision making the last time, but it's really important and we did uh a largescale survey um a year or two ago with prostate cancer patients and what we heard, um you know, we, how much do you feel you participated in deciding on your treatment plan? And this data here that you see is reflected by race and ethnicity. Um But you can see that overall, most people had a pretty good um felt that they had 80 to 100% of their uh a part uh a part in playing with their deciding on their treatment plan. So that's um good. But you can see by those who are uh identified as black or African American or Hispanic or Latino or other, which includes Asian or biracial um in indigenous or Native American, they felt like they had, as you can see um less of a role in playing uh in helping decide on their treatment. And I think it's particularly alarming that some of those that felt they had only, you know, um the less than 50 or at least less than 60% of decision pa uh participation in their treatment decision. And so I think that's really alarming, particularly among those who are Hispanic, Latino and Black or African American have higher levels of feeling like they had less of a partici less participation in citing on their treatment plan. So just be aware of this, this probably isn't surprising but um be aware of it and really just strive to uh involve them in their uh treatment decision making. Ask them if they uh are feel like they're, they're um if this is the plan they want to move forward with, ask them if they understand the side effects that come along with it, ask them if um you know, if they have quality of life concerns, uh, all of those things to just engage them in the process. Um, please. And then, uh, really, I just wanna talk about things that most impact patients lives and I alluded to a lot of this the last time, but um, there are significant emotional and mental concerns, but there are also significant financial concerns. So please, um, as providers are you discussing or screening for financial toxicity? That's really important. A lot of patient surveys have shown that um doctors didn't just uh didn't discuss treatment costs, um how they were gonna pay for it. And so we wanna, this is a concern of patients. So please um you know, ask them ensure that they're uh you're screening for this and understand kind of if they have concerns about their insurance, uh the and the cost of their treatment uh and managing uh side effects. Are you linking them to resources that can help with these things? So, uh do you have uh patient navigators or oncology, social workers or case workers that can help um with, link them to resources that can help them with some of these concerns? Do you have charity care at your hospital or at the hospital they're being treated at? Um Do you have payment plans? These are all things that are, they're thinking about. Um But they, they just often don't know if they're available or not. So please uh connect them to resources that can really help them work through some of these issues if they are a concern for them. Are you screening for depression and anxiety? And I talked about um how prostate cancer patients are more likely to experience depression and anxiety and also be a higher risk for suicide. So please uh discuss this with them and screen for depression and anxiety. And are you connecting them to support resources? So, other than, you know, a a Navigator or an oncology, social worker, as I discussed, um already what other resources are available to them? Support groups, peer support available locally through your hospital or clinic. Um Zero prostate cancer uh where I'm the senior director, we have um over 100 and 50 support groups across the country. We have 1 to 1 peer support, other prostate cancer organizations have similar support resources. Please get them connected um to uh that support if they need it cause it can be really helpful to just talk to others who've gone through this experience, who've gone through these treatments before, have gone through the side effects, living with the emotional toll that this can this can have on their lives. So, um those connections to support resources can be really helpful. And then lastly, I just II said I would allude to this later. So here it is, clinical trials are really important option, particularly particularly for advanced prostate cancer patients. Um So are you asking them about clinic clinical trials. The number one reason that most people say they participated in a clinical trial is because they were asked. So it's very um important that they know that this is an option for this uh for them. Um And it may be so at least even if you don't know if there are clinical trials available locally, it's great if you can ask them and just connect them to somewhere. We at zero can connect them to resources. We have a clinical trial finder on our website, there's of course, clinical trials.gov, it's not super patient friendly. Unfortunately, it's built more for clinicians. But hopefully you've got someone a Navigator or somebody who could also help them, maybe find some of these options available for you. And I wanted to reiterate the importance of this particularly for people of color. We know that diversity in clinical trials is an important issue. We've been working about this and hearing about this for years and years and years and it's not frankly not much better now than it was when we started talking about it 30 plus years ago. Um We need diversity and clinical trials. We need to understand how these treatments work in different populations. So there is a, a program called Just ask, that is uh a partnership between the A CCC and AO it's a training program that's focused on increasing diversity and cancer clinical research. So you see the um QR code, the link there, check that program out. It helps um providers feel comfortable asking and talking to diverse populations about clinical trials and the options for them. So I just wanted to highlight that resource here and the importance of clinical trials cause I really think that it's gonna be uh uh as you know, we have the treatments and the drugs that we have today because of clinical trials and because pa patients participated in those clinical trials. So let's keep moving those uh research advances forward through clinical trials and diverse clinical trial participation. And thank you for um having me and, and listening to me talk about the uh patient and the caregiver experience. Uh I'm happy to have joined you today to bring this to you.