Computer generated transcript
Warning!
The following transcript was generated automatically from the content and has not been checked or corrected manually.
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 that are mentioned, mentioned, side effects 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 partic 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 caseworkers 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 at 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 le 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 ii 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.
