Dana-Farber’s Young-Onset Colorectal Cancer Center's Gut Instincts series continued on Tuesday, January 25 with an educational workshop on Best Practices for Symptom Management. Topics include managing psychological distress, accupuncture benefits, palliative care, and patient reported data. This webinar is for healthcare professionals, patients, and supporters.
So welcome everybody. My name is kimmi Ang I am a gastrointestinal medical oncologist at Dana Farber Cancer Institute and the director of our young onset colorectal Cancer Center. Welcome to Gut Instincts which is our quarterly webinar series for healthcare professionals to raise awareness of common issues that affect our young patients with colorectal cancer. Today I am really pleased to have an excellent panel of experts who will talk to us about how to best manage symptoms and psychosocial distress among our young patients with colorectal cancer just to let everybody know. Please feel free to answer to ask us questions through the chat function, the Q and a function is not active so please be sure to type in any questions that you may have during uh in the chat function to get started. The structure of our session will be about 10 minutes each per Panelist and then afterwards we should have much time for question and answer. So to start us off I would just like to go through our expert panel and have them briefly introduce themselves. But Dr. Lolly, Do You Wanna Go 1st? I'd be happy to hello everyone. My name is Dr Kate Lolly. I am a palliative care physician here at Dana Farber and I am the clinical director of our ambulatory palliative care clinic. It's a pleasure to meet all of you and I look forward to speaking with you. Thank you Dr Pozzo catering. Hi my name is Christina, pose. Okay german, I am a clinical psychologist and a certified sex therapist and I am the director of the Young adult program here at Dana Farber. Thank you. Dr lu Hi um my name is wei dong lu. I'm a lead oncology acupuncturist at the ZKM center Dana Farber. I lead a team of acupuncturist that help our cancer patients with. Thank you. Thank you. And dr McLeary. Hi everyone I'm Nadine Jackson McCleary um a medical oncologist and gastrointestinal oncology. I'm also the founding medical director of our patient reported data program as well as assistant medical director of the patient reported outcomes measures program for the mass general Brigham health care system. Thank you and thank you all for being here. All right, why don't we get started? I think Dr Lolly is going to go first to talk about symptom management. Thank you. Thank you. So perfect. So as I introduced myself before I am Cait Lolly I'm the clinical director of ambulatory palliative care here at Dana Farber and I want to talk with you a little bit about palliative care and particularly in its role in young adults with colorectal cancer. So next slide So just the objectives in my 10 minutes that I'm here with you. I want to talk a little bit about the evidence supporting the role of early palliative care. Um and why it's important to introduce it to young adults early in their disease trajectory. I then want to talk a little bit about the benefits of palliative care. And again why it's so important to think about it and really what we do in a visit with patients. And then finally, I think many people will say, oh I understand the palliative care is important. I know there's good data behind it, but I really struggle with how to actually talk about it with my patients and what language to use. And will they be frightened when they hear about it? So, I want to talk about some language on how best to introduce it. So I want to start with just what is palliative care because it's a question that always comes up and I think it's important to talk a little bit about exactly what it is and what it's not. So this is from the center to advance palliative care kind of our big specialty group or one of our big specialty groups and what they say and how I think of palliative care is it's symptom focused care for patients with a serious illness no matter the diagnosis. So here at Dana Farber, that means anyone with cancer and the main goal is to improve quality of life for both the patient and their family. Now, palliative care is a team. It's doctors, nurses, pharmacists, chaplains, social workers and really a whole variety of specialists who help provide that extra layer of support and what's important with palliative care is that it can be appropriate at any stage of a serious illness and can be provided along with curative treatment, which is what differentiates it from hospice. So next slide. So if that's palliative care, what is hospice and hospice is a subset of palliative care that we offer to patients with a prognosis of six months or life or less. So it's also focused on symptoms. It's also focused on coping and quality of life, but it does have that prognosis associated with, it's a type of care, it's not a place. So it can be provided at a home in a nursing home or hospice facility. And it's also insurance benefit that's offered to our patients. So it really it's an important piece because I think when we talk about palliative care and when I talk with you about the benefits of it and what it offers, I want to be clear that while hospice is a wonderful um a wonderful benefit and it's really important in the lives of many our patients, it is very different from palliative care. So I want to talk a little bit about outpatient palliative care, particularly in cancer care. That's the type of care that I provide. I'm an outpatient physician. And I think it's it's important to think about palliative care in the outpatient setting now. Often in many hospital settings across the country or in many settings across the country, palliative care has offered more an inpatient settings than outpatient. And I know it can be hard to get access to palliative care um in different places across the country. But if you have access to it, it's important. And why is that? Because when we're in the outpatient setting, we're often meeting people earlier in the disease trajectory. And I'm going to share with you the story of a patient that I cared for um that I did meet very early in the disease trajectory. And we can talk about the benefits that we offered to him over time. It also allows us to see patients sort of at their best, right? They often have a good performance status early in their disease trajectory. And we can build that report. We can get to know people over time. We can talk about counseling and education and we can start thinking about how to prevent crisis is and optimize treatment so that patients are less likely to end up in a pain crisis or a nausea crisis that either delays their treatment or prevents it. So by doing all of this, we can get connected to people and help them earlier in their disease trajectory and honestly help them more. So I promised I would talk a little bit about the evidence behind palliative care and I want to share this one study out of mass general and I'll say there are many studies like it. The study has been replicated or versions of it um many times in different diseases. But this was a big study for us in palliative care. Looking at early palliative care for patients with metastatic, non small cell lung cancer. And what they did in this study is they took patients with a relatively poor prognosis cancer, metastatic non small cell lung cancer. And they divided them into two groups. First group that the same excellent care at Mass General that they always would have gotten. The second group got that care. And they also got a once a month visit with a palliative care team. And it turns out that the patients who saw palliative care, they had a better quality of life. They had better symptom scores, but they also lived three months longer. And I think for many of us, what this really meant was not palliative care. I think people often thought of as a choice. You can choose to live a longer period of time and suffer or you can choose palliative care and you may die soon. And I think for many of us it showed that that wasn't a choice that you can both have a longer length of life and a better quality of life by involving palliative care earlier in the disease trajectory. So I want to share with you a patient of mine, a patient I cared for quite recently, a young man with uh metastatic colorectal cancer. So he was 49 when I first met him. Um and he had colon cancer with mets to the liver. Now I saw him almost immediately upon his referral to dana Farber. He had bad pain, He had pain from the liver involvement um, and was on some pain medications? And so I saw him initially for pain. And then as he started treatment for his cancer, he had a good response and the pain improved. And we were able actually to get him off of the pain medications and as things kind of calmed down as we came out of that initial crisis, he wanted to talk with me about prognosis, you know, he was an amazing guy and he was incredibly active. He biked, she hiked, he was running, he was walking and he wanted to be able to do all of those things, but he also wanted to talk about what to expect As his illness progressed, he wanted to talk about what impact this would have on his two sons, on his family, on his mother and he really wanted to think about what to expect in terms of symptoms, in terms of what would happen with this functional status over time next side. So as we met and we talked, we addressed many of the different domains that we do address in palliative care visits. You know, we talked about those physical symptoms for him. Pain was a big symptom and it later visits, nausea would become more of a symptom, but we addressed many of the physical symptoms that were affecting him. He also had a lot of emotional concerns. He was anxious. He was worried about the future. He wanted to get support around coping with this illness and get connected to our social work team. He also worried about the people he loved, the people around him. How would his disease affect his family, his Children? How would he financially deal with some of these things? And he wanted to address all of that. And while he was not a religious man he was deeply deeply spiritual and he wondered about what would happen to him after he died. He wondered about finding meaning in his suffering. And these were things we talked about both in those early visits as well as later on. And then finally he wanted a lot of information. He asked me very specific questions about what symptoms to expect at end of life. How do you know when death is near? How do you know when time is short? And so he would ask me for a lot of information about these things and we would talk about it. So we really addressed many of these domains both in our initial visits and then over many subsequent visits over time. And it turns out that this is commonly what happens in palliative care. This is from a article in J. C. O. In 2018. Looking at what happens in a palliative care visit over time. And you can see on the X axis we have sort of a different number of visits starting with that initial visit with palliative care all the way up to the last visit before end of life. Um And then you can see the percent on the y axis, the percent of visits. How many times did we address each of these different issues? And you see on that first visit were often building rapport, were often starting to really get to know someone know what's important to them. We're also often addressing symptoms and coping and you can see as time goes on we're spending a lot less time building rapport, but more time doing advanced care planning, more time assisting with treatment decisions. So the shape of the visit certainly can change over time as well. And also as we think about all these different domains and how we address them. I want to remind you that this is not something we even as medical providers are the primary providers of often patients are working really closely with their families as my patient was but then we are also there supporting all of them. So whether we're nurses, we're pharmacists, where chaplains were acupuncturist, many of the people you'll hear about today, we'll be talking about how we as a team are providing support to that patient and their family. So, you know, if you believe me, the palliative care is important that this is an important thing to talk about with your patients. How do you start to do that and what language do you use? And so I wanted to just share some language here um that I've heard people talk about and when they talk with their patients. So the first one is there's another part of our team that I'd like you to meet with. And I will say this is a key piece because it's really important. My patient that I talked with you about, he didn't see me as the different team. He saw me as part of his oncology team. And so he would often send messages to his oncologist and me at the same time because we're all one team. And I think that's an important part of really integrating palliative care. You might then talk about the specific reasons you're sending someone. You know, you mentioned this pain, this nausea, these these symptoms that you've had. The palliative care team can really help us better manage those. And that's why I'm sending you. Sometimes it can be helpful to sort of acknowledge the elephants in the room. You know, say, you know, sometimes people hear about palliative care and they worry that means end of life. They worry that means hospice. But I want to be clear. That's not what we're talking about today. I really want to make sure that you're coping with this illness, that your symptoms are managed emotionally, you're getting the support you need, etcetera. You could talk about the national recommendations that suggest all patients with your type of cancer have palliative care as a part of their team. So really talking about the data that supports the role of palliative care or finally say, you know what it is that we do palliative care can help with physical and emotional symptoms that come from living with cancer. There an extra layer of support and part of your cancer team. So I will leave it there and then I'm also happy to answer questions as we move towards the end. Thank you. Thank you so much. Dr plaza catering. Thank you. So, um as I mentioned during the introductions, um I am a clinical psychologist and I oversee the young adult program and I'll be focusing today briefly on the psychological distress that young adults with colorectal cancer may experience. So when we look at young adults with cancer, it's considered they're considered as a group, an underserved population. The reason for that is because in the path and until recently there was quite a bit of attention from the psycho social perspective and from the medical perspective on pediatric populations And older adults. But when you looked at this age range from about 18 to the 40s, there wasn't as much focus and for that reason and not being so focused on that, what many of our young adults will complain about is that there are often delays in diagnoses. So patients may say that they go in, they complain of symptoms, but because they're young, um they may complain about G I distress, for example, and sometimes it's attributed to stress or other factors, whereas in an older patient population, they may more immediately um go ahead and get worked out. There's also the concern with insurance and financial barriers. So for many of our young adult patients, they are in a stage in life where there may be concerns about insurance, they may be early in their career and so their finances may not be quite where they would like them to be. So again, there you're going to have things that are gonna affect young adults differently. And often it's a common cancer at an unusual age. So that's critical that these are people who are young, they're going through something that if there were 70 or 80, they would have lots of peers that would understand it. But when they're in their thirties or forties, they're often very alone in dealing with that experience. So, I give an example of a 28 year old that was diagnosed with colon cancer and she had spent quite a bit of time going to her primary physician and because she was in school On her masters and had many stressors, you know, quite a bit of time lapse before she finally got to go in for her colonoscopy and was finally diagnosed. So, again, not common at 28, so the symptoms weren't easily attributable to a possible cancer diagnosis. And again, the concerns are different and it's not often just the age, we look at it as a developmental stage in life, what is happening to that person at that stage in their life and what is being disrupted by this diagnosis next slide keys. So very specific concerns about young adults. This whole idea about identity development and autonomy. So I'm going to go back to the 28 year old that was diagnosed with colon cancer and she was working on her masters in school. So when she was diagnosed, she was living independently with a roommate. But upon that diagnosis, she became pretty overwhelmed with so many different tasks that she was trying to balance and financial concerns. So she moved back in with her family, which again provided support. But as you're trying to form that sense of self, you all of a sudden have to go back to living with your family of origin. And these concerns about being yourself um are not fully realized and it interferes with who you are and the family involvement. Wonderful to have family. But again, as you're developing as an adult, it's great. But at the same time can be challenging at times In relationship with peers. So when you are in your young adult years and you get diagnosed with colon cancer, you may not have all those peers around you that you can talk about what you're going through if you're 70 or 80, there's a high likelihood that there's peers that have had similar health challenges and can be there for you When you're in your 30's and I had a 34 year old young man that was diagnosed with rectal cancer. He was again, felt pretty alone and his friends just had very little understanding they cared for him, but the understanding wasn't quite there. And the way that young adults communicate is often very different. And one of the things that they will often share is that when they're young, they don't often feel that the health care system looks at them the same way as they do older adults, particularly if they're coming in with their family and with extended family at times the issues of fertility and reproductive health very different. Again, for the young adult population, not always there as present for the older adult. Um, fertility obviously is gonna be there much more for the young adult and the sexual health is there throughout the live continuum. But again, it really interferes um with their whole psycho sexual develop. As I said before, the financial burden. I right now have a 43 year old with colon cancer and he's an attorney and has a very stressful job and he has three Children all under the age of 15 and he's saving up for college. So while he would like to maybe take a break and change careers because it's stressful there's that financial burden which leads to the following one about education and career planning. And lastly, the long term sequelae after you go through treatment and we'll talk more about that next slide please. So I'm going to focus just for a minute on sexual health because I know it's one of those topics that's not that often addressed at any age, but particularly not with the young adult population. And this is a whole talk in and of itself. But I just really wanted to bring attention to this topic because it's not like you get diagnosed with cancer and you stop being a sexual B. And so um early on the focus is on care and treatment. But at some point this does need to be addressed. And I think many health care professionals sometimes have the discomfort of dealing with that. Or again, there's limited time and not always a priority, but we do know that for young adults specifically, um there is a negative impact to their sexual life when they're diagnosed. Part of it may be because they're young and they're still developing in terms of sexual beings. It may also have to do with, you know, developing their sense of identity and sexual orientation, which, you know, can go on into your twenties thirties, even forties and you know, if you're just developing your intimate relationships many times they're single, they're not with a partner and even with their if they're with a partner, um young partners may have a harder time understanding the impact of cancer because they're young and again, they don't have those pure relationships to discuss this and the changes in body image. So this slide just really highlights that this is a concern. And hopefully it's something that can be addressed with patients by simply asking at Dana Farber, there's two of us um not all centers have um sex therapist to work with cancer patients, but again, it's something that at least needs to be brought up and asked about next slide, please. And when you're talking about distress or psychological well being, um there's many ways to define it. And so some people think of distress or psychosocial well being as anxiety or depression. And again, when you're looking at young adults in general, you can see that there's a lot of variability in the rates and part of that has to do with how it's defined and it varies from study to study, but quite a number. And I think that in my own personal experience and clinical practice, anywhere between 25 to 35% do report high levels of distress and young adults are not always the most likely to express that verbally. And so it needs to be discussed and sort of normalized that these feelings are normal and to be expected because they're going through something that is not typical for their age and making it normal to seek help and support if needed next slide please. So when you look specifically at colorectal cancer and young adults and quality of life in quality of life we look at as a composite of different aspects of a person's life, including their physical and well being and their health, their social life, their emotional well being, their financial well being. When we look at that and we look at young adults with colorectal cancer, their quality of life in general is lower than that of older adults with colorectal cancer. We also know that the longer time from diagnosis there seems to be an improvement in emotional and physical well being for young adults. But overall their quality of life is still low and the longer time from diagnosis to time of assessment, the social well being does not improve. So while their emotional and physical well being improves and it's still low, the social does not and I'll talk a little bit more about reasons why they may be. Um the higher levels of distress are in general higher for young adults than for older adults. So not just quality of life but also anxiety and depression and fatigue, diarrhea, insomnia, financial challenges later stage at time of diagnosis, low social support, rectal cancer versus colon cancer, negative threat appraisal and a permanent stoma contribute to a worse quality of life. And one point that I'm going to make here in terms of the social well being, is that um, several of my young patients have said to me that it's hard to socialize and go out because all of a sudden they have to get to a place and look around for the closest bathroom in case they develop diarrhea, in case they have something uncomfortable happen and they pass gas. So when these concerns come about, that interferes with them being able to socialize and be a part of life Because they're different. And again, that social well being also means peer relationships and as a result of the pandemic, one study found that 40% of young adults reported higher anxiety and higher levels of depression. Next slide, please. So how do you cope with this? Again, this is sort of a talk in and of itself. But I'm quickly going to say that one of the differences between young adults and older adults is the focus on feet on peer focused programs. Young adults really benefit and want that peer support, whether it's through social media support and peer groups, apps, organizations that seems to be really important for them. And I'll talk more about our resources for that. And they're very much open and receptive to innovative programming and creative exploration. You know, they really love to participate in expressive arts, songwriting. I've had several of my patients that have written songs, they've participated in music therapy and very open to mindfulness and relaxation. We know that exercise and yoga can be so beneficial and again, young adults are very much attracted to these programs and benefit. one of the things that's sort of a little different with young adults is they're very interested in self advocacy training and learning how to communicate with the medical um uh specialist and how to be taken seriously and how to advocate in general for their health and their wishes. And then obviously psychotherapy and that's more individual therapy, which again is not about there being something wrong with the person that's not the focus of psychotherapy within the cancer context, is that there is something wrong with the with what is going on there, having something that shouldn't be happening to them at this young age. And so how do you cope with it? And then finding meaning? And that's one of the things that we do a lot in our groups as well as individual therapy while getting diagnosed with cancer at this point in life can be so devastating and so challenging. Can you find a way to find some positives in it or to make some meaning out of it? And again, an individual therapy or in groups, we do this and then last slide please. So at Dana Farber we have great support. Um our social work department um in conjunction with the early onset colorectal program offers a support group on a monthly basis. The second center which will hear about more offers, you know, exercise and yoga and many other programs on mindfulness and relaxation. And our young adult program which I oversee um offers peer support programs and groups and we leave these throughout the year. We also have innovative and creative programs. We have a uh journaling and writing workshop tomorrow that will be offered at five o'clock. We offer other workshops on cooking and exercise. And we have an annual conference every year. And this year it will be throughout the month of april um for young adults. And then we have an app that is specific for our dana Farber patients and we hope to extend that for other um centers throughout the country. And I also think that it's good to be aware of some of the other programs that are available, whether it's specific to colorectal cancer patients, but just um young adults in general. And that's the colon club, Stupid cancer, cactus cancer society, elephants. And T. Is who we're doing our workshops on writing and journaling tomorrow and voicing my choices again. If you contact the young adult program um at dana Farber will be able to really get you in touch with many of these other resources as well. Um So thank you very much and I'll be around for any questions you may have. Thank you. Thank you so much. Next up is dr lu thank you. My name's wade on you and thank you for inviting me to keep your talk about the acupuncture and I specific focus on called oncology acupuncture. Many of you are probably not familiar with oncology acupuncture. What's the difference between the acupuncture and oncology acupuncture and what that um to help the rest of cancer patients. So next slide my disclosure and there's no no conflict interest here. Next. So that's what I'm going to talk about. A little bit of acupuncture background. And also we are focusing a little bit of uh N. C. C. A guidelines regarding the acupuncture. Most of you probably familiar with the NCC guideline but you may not know there's actually acupuncture components there. And then we'll talk about some clinical trials for acupuncture that specifically focus on the colon rectal cancer. Um Then we touch upon this non biological basis by acupuncture and some insurance coverage. Next. So what is the acupuncture? You know? This is uh an NH 1997. Quite a long time ago. It's a definition. And basically acupuncture is just a family of procedures so that stimulate this particular anatomical location which is mostly on the skin. And we call these locations are wanted points and the tool to use to stimulate these places are mostly needles and the metallic solid needles and then manipulated by hands or by electric stimulation. So essentially exposure is a type of therapy of a stimulation to generate a particular the sensation to the patient. Next one. So the in the N. H. Um In overall the N. H. N. C. C. I. Which is the organization, the center that specific focus on the X. Point research at the NIH ah They summarize these five points here and acupuncture has been extensive study that in general pain conditions but not cancer like a paying back pain, neck pain, knee pain. So that being studied quite a bit. And uh but they're start now touch upon this other health conditions such as we're talking about here today. The cancer related situation and uh mostly active and have been found so far. Uh the most effective condition is pain and and also the other conditions, the health issues that had dressed and that the acupuncture overall considered to be a safe procedure and if it's performed by the well trained professionals. Next one. So this is a bit of older data and um they're in the United States up to the 2012 was almost 20 years or 10 years ago. It was about a year. About 3.5 million page people that received general public Receive acupuncture. So it's very small actually 1.5% above the general population. But the overall speaking and it's about a 6.2% of the general population has received Acupuncture. So it's close about 15 million Americans has had. Next one. So however, in cancer patients, the percentage is much higher and relatively still small. But compared with 1.5 in general population is 4.5 percent about cancer patients have used the acupuncture. Uh Again this data are old. So we're expecting this number has has increased significantly in recent years. Next one. So what is on college acupuncture and uh Next one. Yeah. college is specifically we use acupuncture in for cancer patients because that um is involved the cancer. But we all know has very specific needs, conditions. And sometimes sometimes they are much more complicated conditions such as you know, meth aesthetic conditioning and uh some of oncological emergencies, neutropenia. These kind of things that require the practitioners acupuncture is aware of this situation. Can can apply the acupuncture for this list, the population. Next one. So in the oncology acupuncture as a new specialty is we have a standardized procedures. We are really focused on labor based safety rules and uh and it's using the evidence based protocol and we try to quantify the outcomes. And so it's a little bit more away from a traditional style acupuncture and then try to be part of the oncological supportive care. Next so the look at this acupuncture where the accident can be used for the patient population. So this is our five cancer continuum. You know from prevention, diagnosis, active treatment and follow evidence, survivorship in the active treatment. This is the one area that the active funds can be very useful. Uh Next one. So we know that surgery, chemo radiation and hormone therapy. They all involve various side effects. And so that in that part um stages encourage acupuncture can be used to reduce the relatively side effects from the surgery, chemo radiation and uh hormone therapy. Next. So that's it is on college. But in addition to the active treatment and uh even the patients have finished their active treatment in the follow up stage and survivorship acupuncture. They're all study of data support that wanted for that stage as well even in the end of life care. Next one. So this is N. C. N. C. I. And in 2017 has published a summary of the oncology acupuncture. And en ci is supporting think of the college is a new the emerging specialty area of practice and um so this is a very new area and a lot of excitement studies coming out every every year. Um So we're we're looking for this to become really useful supportive care for cancer patients. Next one. The N. C. C. I. As we know they published many guidelines to to guiding the cancer treatment um for most people you don't know actually also issued the guidelines For supportive care. Next one. Next Yeah and um they recommend acupuncture for specific five conditions. And this is uh next one. Yes that one is the cancer pain. The second is the anti nemesis which is anti nausea and vomiting, cancer related fatigue. and um next one the palliative care um As dr mentioned the palliative care expanding actually helped on that as well. And the survivorship. So there's all been ridden in the N. C. S. A. Practice guidelines. And in the past several years. Well In addition to this Esco in 2016 also published the guideline for adults in chronic pain in the survivorship and in these guidelines. The acupuncture also had been recommended to be used for for the patient with chronic pain. Next one. So specific condition that the expansion has been used and supported by the randomized trials are the six of them. So far, we can summarize. The first one is um cancer pain. The next one is um Next one, yeah, Nausea, vomiting. The next one is fatigue, cancer related fatigue, half lashes. And next one and dry mouth was the most focus on in the head, neck cancer patient. And the last one is the chemotherapy induced program. These six the symptoms are a lot of studies have been published next month. So the cancer pain next one Is uh this is a jam our study, the random random randomized trials and published in 2020 About 1617 patients, 17 studies over 1000 patients. So, you've been looking at this data and uh and the particular one in the middle line, you can see the acupuncture versus plus energy asia with the pain medicine versus uh pain medicine alone. So, these are different paint types, the lung cancer, pain, gastric cancer pain, uh neuropathic pain and metastatic pain. You can see this the square dots and falling on the left side of this. Um the vertical line which indicates that favors the acupuncture then versus the control. And for the pain particularly the treatment is the model to severe pain acupuncture clearly has the benefit. And uh as compared with the control which is the control at least here is the using the pain medicine alone. So in here that tells us that the acupuncture plus pain medicine usually has better results clinically than use the pain medicine alone. Then the last category you can see the acupuncture versus weight control uh control study that clearly show this uh the square that's falling on this left side and um that favorite acupuncture um with versus wakened. You usually hear awaken to our usual care uh in medicine. So when it's acupuncture you have a better control for the pain. Next one. So the neuropathy is another issues. So here is the ex manager for platinum induced Pro from europe which is very common cancer patient. This is the 10 cases the case series. And the patients are receiving the full box chemotherapy and develop all various you know um the degree of the C. I. P. M. But at the end of the acupuncture treatment, the degree of the damage are reduced next month. Um Next one. So this is another study of 17 patients in that they tested them. Again, it's a related uh C. I. P. M. So they have a pain perception and so we often see patients have numbness tingling in the in the hands and feet. So they can see the bar show shows that before the treatment and after treatment. This numbness that reduced over the time. And the next bar in the in the below the panel B showed this to the cold uh sensitivity and the before the treatment, the patient have a very sensitive to cold. But at the end of the treatment and they're called torrents increase significant. So these are very specifically for the um patients receive oxide pailin induced in your office. Next one. So this is on Jama, published in 20 in 2020 again for the neuropathy study. And this is kind of mixed group with breast cancer and colon cancer patients. And they all have a manual acupuncture plus the electric acupuncture. And with eight weeks of treatment. Next one, the symptoms focus on paying tingling numbness. And you can see here in the in the the red uh square in the real acupuncture group that they all had a significant reduction from a pain tingling and numbness, welding sham control. And the change is not significant, only numbness that had some statistical significant changes but not in pain, not in tingling in the usual care arm. This change is not exist. Next one. So this is another meta analysis about the chemotherapy induced neuropathy from china. Then most of the study here listed rent my trials are colon rectal cancer mixed with other types of cancer breast cancer that involved 1000 patients. And so you can hear that there's as the opposite. You can see it in the control side. It is the error pointing that the patients have not received an acupuncture has much worse uh sensory damage which is in the top panel and in the middle is the model damage neurological damage. And so you can see here uh Actually the expanse seems to be better when they are treating but sensory damage, tingling numbness in patients versus the functional model damage is the result is not um that beneficial. Next one. Um This is um you know, we skip this one. There's a last panel is for the pain, the P. P. P. N. The pain score. You can see here the patient received that acupuncture has a much lower pain uh score versus the control uh in that suburb. Next one. So the in addition to Europe, the X. one also can help the nausea, vomiting particularly during the chemotherapy. And um so one of the uh is another surgical related condition in the colon rectal cancer. This is a post operative Alice in which that colon rectal cancer after the colon surgery often have a dysfunction of the G. I. Condition with difficulty to pass the bowel, pass the gas So that this matter. Unless with over 1000 patients show there's a benefit of an acupuncture using the post operatively and can improve the colon function and to speed up their bio function to pass gas and pass the vehicles. Next one. The activity also has been shown to improve the appetite in the cancer patient This study actually was using expanding in the ears and just put the ears. And they found that in the eight weeks later the two groups, one receiving the ear expander versus usual care group, uh Acupuncture group has a much better the appetite versus the group that has the usual care. Next one The Nausea vomiting. This is a little older study in 2020. Um but it's a it's a seminal study that they're testing is a breast cancer patient and they're going chemotherapy and then measure their uh the Nausea, the episodes. So there are three groups and the next one. Next one. Yes. Oh no, next one. Yes. So this is an interesting stuff. You can see the three groups. One group received electric acupuncture, another receive minimal needles which kind of control. And the third group is as drugs to control the nausea vomiting. So during the five days of treat the treatment, the patients received electric acupuncture as much lower episodes about vomiting and versus the minimum needle in control and versus drug group. So this is uh has been this study has been quoted many times that you know show the benefit of the uh we do in the clinical practice. We do see in colorectal cancer patients also see the similar results. Next. So how did the extra work? And um this next one. This is actually a study and I didn't quote a study here. There's a very big multi multi center study with 600 patients. There is acupuncture or electric stimulation for the lower limbs. You can see the legs you know S. T. 36 ft. 37. And they're given stimulation. Then try to reduce this uh list after colorectal surgery. And the results actually was positive of not talking about repeated previously. It just also our proposed the mechanism and how that actually works and to achieve the results. And here is he suggests that you stimulate the acupuncture in the legs of the patients and through the nerve transaction and and activate the vagal nerve in the in the brain and lead to increase of the acetylcholine and then causing the reduction of the interrupting six and increase the production of the intervention. Temp then enhance gastrointestinal function coloring. So that's it's the The author of the proposal and that's the next one. Actually. His this idea has been replicated next month. So this is actually the newest study in the journal Nature. And that's actually the author is Dana Farber dr ma in his lab and he found that the electric acupuncture actually can drive the bagel adrenal access to to to produce anti inflammatory function in the mice. And so you can see from this um the the picture here the mice the legs are being stimulated with the exponential needles then activate particular receptors and uh in the in the legs. Um And these receptors. Send a signal to the brain and the medulla then activate the vagal nerve and the adrenal glands then release nor adrenaline, adrenaline and dopamine and substance that lead to the suppression of the inflammation. Um So if you're interested you can look at this paper very exciting. Next one. So this is a study that ongoing technical trials including record cancer. One of the study in the in the United States so far relate to relate to the colon rectal cancer. One of the study I'm particularly interesting is that at the Seattle Washington here is that they use the testing the oral the cranial therapy plus the acupressure acupuncture versus the oral cryotherapy to reduce uh neuropathy in colon rectal cancer patient. So it's still ongoing. So looking forward to the study results and and uh M. D. Anderson there's a post operative pain in colorectal cancer in uh in your room catering. They have a colon cancer patients cognitive function to see if they can improve that. Next one. So last here I want to touch upon this insurance access actually anticipate recent year in massachusetts. Uh there are many insurance companies that I just list. It's not complete list here have provided coverage to the acupuncture and uh but there have always a different condition or restriction. So really increase the patient's uh looking at their fine print about the any restriction on the insurance but the good news is that actually many insurance companies started covering acupuncture and I think a lot of patients will benefit that next one. Thank you very much. Thank you so much and then last but not least dr McLeary. Hi everyone, thank you for this opportunity to talk to you about the patient reported data program. And it's so many of my colleagues have shared really the central purpose of our meeting today is to figure out how we can amplify the voice of the patient and how we make decisions and how we address their primary needs, management of symptoms and primarily quality of life Next side. So our agenda is really to talk to you about what is patient reported data, How do we use it and how we historically done so a dana Farber and then how you can learn more about this process and get involved next slide. So patient reported data is essentially an umbrella term encompassing a diverse set of data that is directly reported by the patient that is without any interference or reinterpretation by anyone else. And this could include questions about screening, medical history, social history, symptoms, outcomes and adverse events. Next slide. So we have turned to patient reported data primarily in pharmaceutical in the pharmaceutical industry. They have leveraged a variety of different data sources that we use. So when you're searching on google or amazon, believe it or not that is being reported out to pharmaceutical industry to understand what you're interested in, how you're using medications and what other resources could be deployed for the benefit of patients. So, we've had this tradition for a long time, but we've really limited in terms of our direct collection of information from our patients. And we started to do so more recently at the Dana Farber and other sites next slide. So at the Dana Farber, we have started most recently. This was led by one of our colleagues, dr Deborah Schrag, collecting a variety of information, including pathology, radiology, imaging symptoms, signs, tumor markers and of course the oncology medical provider and I would add the patient assessment and pulling all of that information together because we know that cancer is complex and the way we address it and make decisions is complex and we need to look at all of these pieces of information. So, here I really want to highlight the ways that patient reports are being incorporated in our decision making next slide. So many have alluded to patients that we've cared for. And you can imagine anyone that you're caring for maybe yourself asking these questions if diagnosed with cancer. So how will I feel while I'm on treatment? What will the impact be on my physical and mental well being. How long will it take for me to recover from an intervention or treatment? What's the risk of cancer in my family and what can I expect in terms of the impact of side effects and believe it or not, a number of these questions while not available in clinical trials, are available based on a collection of patient reports across their cancer care journey next slide. So, one of the largest pieces of evidence comes from colleagues at Memorial Sloan Kettering again involving dr Schrag but also DR bOSCH and others where they looked at 12 core symptoms or symptomatic adverse events, things like nausea, vomiting, diarrhea, pain. And they ask patients simply to just report what they were experiencing, how severe it was, what the impact of that symptom maybe at the time. And these were patients who were diagnosed with advanced illness, who were receiving active chemotherapy. About half of the patients had no prior computer experience and they were asked to do so on what were outdated tablets um and kiosks. Um and these patients, despite going through this process, that was fairly new experience longer survival, fewer emergency department visits, fewer hospitalizations, so less interruptions to their treatment. They were able to stay on treatment longer with minimal impact on their care team and high patient engagement. Even amongst those who said they had very limited use of computers before. And this was quite impactful when it was presented at ASCO many years ago because it paralleled some of the improvements and even to pass some of the improvements that we see with some treatments next slide. So patient reported outcomes of the collection of patient reported outcomes has since been widely endorsed by a variety of different regulatory bodies, including the National Cancer Institute and the FDA. In fact, in 2009, the FDA put out a paper suggesting that we should be incorporating patient reported outcomes directly in our approvals of medications such that you can make a decision by using that information as a part of it next slide. But we've struggled to figure out how exactly to do that. And since the 19 eighties at the Dana Farber and at other sites, we've had a variety of different ways of collecting information, mostly on paper. Um and then between 3 4016 we had a composite of different strategies. Some were on paper, some were collected in different databases, but none of these Responses really spoke to each other. And then in 2017 we really attached ourselves to an opportunity and I do view epic as an opportunity with our new electronic medical record to be able to pull all of these disparate pieces of data together in one place. So all care team members and patients can view this information and begin to use it to make important decisions. Next slide And so in 2018 the dana Farber formalized the patient reported effort, patient reported data or PRD efforts under what we call the patient reported data program really with the goal of amplifying the patient voice. What we're hoping to do is to improve equity and experience for patients next slide efficiency and innovation for the care team next slide and quality and value for the health system. Next slide. And so since 2018 till present we have been able to deliver exceptional value and impact to Dana Farber. In all three of these objective areas, we have over 100 and 50 tablets installed at check in for those patients who are not yet enrolled on the patient portal or don't feel comfortable using a tablet or device at home or don't have access to one. We have over 50,000 unique patient responses as a result, over 1000 those and increasing in those with limited english proficiency. And that was at a time when the system was not built for non english speakers and that has since changed in terms of efficiency and innovation for the care team, we have several quality improvement and research projects that are supported by this data. We have automated scoring alerts and referrals that lead to interventions in response to this information and over 120 data points for research and clinical care that is used in different studies and operational efforts. And then for the health system we have multiple network sites engaged at our institution and working with other sites as well. We have cost saving efforts leading to pay for reporting and pay for performance value based contracts. These are contracts that say not just based on what you say the cost of care is but based on the outcomes of the patients experience, we will save some um costs and transfer that to our patients and then we have a large repository now that we can use to measure outcomes across the cancer care journey next slide. So we have a cross departmental and patient enriched governance system. So I'd like to highlight that this is a huge team. Only a few are represented on the slide. You'll see more at the end of the talk. But jess Cleveland who has joined us this evening, is our program manager. We have a couple of project managers as well, Sarah Whitaker and Michael Manny. We have fantastic analysts, a research specialists, we have applications developer, we move from the content build, we implement, we analyze, we steward the data and then we cycle back. Um I'd like to highlight that across our institutions leadership. We have several key players who are involved in helping us to develop this and strategize along the way. And most importantly we have to patient family advisory council members, one representing our english proficient cohort, another representing our non english proficient cohort who advise and guide along each step next slide. So we've made significant progress in terms of technical capabilities and patient engagement as a result of this full team's effort. So patient reported data, the tool or questionnaires assigned patients are able to respond on any internet enabled device next slide. Um and as a result we have several questionnaires that are completed across the cancer care journey. So at a consult a new patient may be asked to report on their family history, their medical history, the social determinants of health, there are geologic history. These are all screeners. They give us some background information, baseline information. They identify potential key barriers to care on treatment. We are able to monitor and maintain a patient's care by understanding any elements of distress that may emerge or symptoms resulting from the illness or symptomatic adverse events resulting from our interventions, are treatments or surgeries etcetera. And then for established consults, if you can go back, we have patients who may update their background and add additional information regards to barriers that happen over time. And then of course palliative care highlighting my colleagues as well. We collect a lot of information that is shared with our psychosocial oncology and palliative care teams as well. Next slide. So this is the patient reported data life cycle. So the assignment response secure team has an opportunity to review and respond and that that's not just the person that's in the room with the patient that's secure team as a whole. So our social workers, resource specialists or oncology nurse navigators. There are large group of folks who are using this information to provide for improved care and outcomes for our patients. And then we can aggregate this data across uh the entirety of a patient's experience. So we can look at clusters of patients on particular therapies like immunotherapy or those who have had a particular intervention like surgery and our hope and our goal and our effort really is culminating now with population health management interventions which I'll mention in a bit next slide. So the care team ability to review and respond. Um So the P. R. D. Is the question has assigned. We can track that information quite carefully. Patients are able to engage in a variety of different ways. If you're coming in for a virtual visit or in person you can answer information prior to your arrival. Our patients are able to answer in multiple languages and by the end of this Fiscal year will have all six of our primary language is up and going and we do have the tablets as I've highlighted in the clinic. As a result of this the response rates have increased from a paltry 5% to now upwards of 70% and increasing, which is fantastic. Next slide um in terms of being able to pull this information together to aggregate and then to respond next slide we do have a data science resource who helps us to pull all of this information together our care teams and doctor and was a part of this when it was more painful I would say when the visualization was not what we needed it to be. Now the way that our providers are able to look at this is much easier to see and you can tell right away um those things that are going in the wrong direction with upwards and red arrows, meaning that maybe we need to pay attention to the fact that this patient's having increasing difficulty with swallowing and if the patient did not have the words or the wherewithal to advocate on their own, we would have this information just based on some of their responses to questions next side, we can trend that quite easily and this can be done within the electronic medical record next slide and we can pull that information into our documents as well next side. So there's a variety of different interventions that we have in place when we speak about population health management. This is one such intervention. I mentioned that new patients may come in with barriers that they are aware of but may not understand fully how that may impact their cancer care. There's a study called resource or routine evaluation of social determinants of health and oncology, a user informed resource coordination, engagement effort. We're evaluating new patients regards to barriers such as transportation, housing, food, and financial security. And that's across all patients. We know that some patients while they may be financially well off initially towards the middle or towards the latter parts of cancer care journey that um can change. And so we are screening patients at the outset and then coming back about three months later and asking again and connecting patients to resources that are available and we're doing that earlier in the cancer care journey before distress sets in before their interruptions like edie visits, hospitalizations or missed appointments. Um So our goal really is to reduce unplanned interruptions to cancer care for patients who previously identified unmet needs next slide symptom management. This is a huge effort that is being launched by dr michael hassett across Dana Farber. So we've been able to gather and this only happened for the first time a couple of years ago and really understand what are the key symptoms or symptomatic adverse events in our patients experience pain, fatigue insomnia are the primary symptoms that the patients experience regardless of their diagnosis. But you can imagine for young adults with colorectal cancer that may shift a bit. So understanding what are the key areas, what are the key concerns and then developing interventions has been a large outcome or output from this effort. The symptom management program will do just that. We'll be able to not only monitor patients but intervene and do so earlier, pulling together all the resources for supportive care that we have at our institution. Next slide. One of the ways that we did this was partnering with our oncology nurse navigators and just by asking our oncology nurse navigators to reach out to patients who had moderate to severe symptoms of symptomatic adverse events. We noticed a trend in reduction of any visits and hospitalizations. This was in the genital urinary clinic. What we imagine will see the same impact in other groups as well, such as G. I. Next slide. So if you do have any questions, our website is there, we have a lot of information that's posted there, a lot of data that could be shared as well. I'd be happy to along with our co panelists to answer any questions that you have. Thank you, thank you all so much. This was such a comprehensive session, looking at what our patients with colorectal cancer go through from nearly every perspective and it's really exciting to hear some of the interventions that are being put in place to better amplify their voice so that their symptoms can be better managed. Um So a lot of good questions have been coming in. I'd like to introduce Bridget here, who is our young onset colorectal Cancer center Research and program coordinator, who will help to field some of these questions to our panelists. So perhaps I I can just start real quickly with one question to Dr McLeary. Um you know everything that you have done to help implement the P. R. D. Program that dana Farber is amazing and will have huge impact. Recently. DR BOSCH presented the results of his protect trial which was that randomized cluster trial that showed that weekly digital monitoring of patient reported outcomes really lead to improve physical functioning? Um There are clearly a lot of barriers to implementing that kind of program in any health care system. What are some efforts that are going on here to to implement that. And what about people who don't have access to technology? Yeah, fantastic question. Thank you. Dr ink. So I would say the protest studying doctor continues to do. Amazing work is pivotal. It shows us that it's feasible. A number of different implementation strategies have been tried, but digital is far and away. Probably the best and most efficacious. But as you've highlighted, it doesn't apply for everyone. Um I think the first thing that I would say is that not this is not a one size fits all solution. It's a solution really meant to capture and try to get at what are the essential concerns of patients as they're going through their cancer care journey. But there are other opportunities as well. We do have a study, we know that patients use their cell phones where they may not have computers or tablets. They're definitely using their cell phones. And even amongst patients in resource limited settings, they will use their cell phones. We've shown that our dana Farber patients who come from certain low socioeconomic groups will use their cell phones for health care as well. So they're happy to engage in that way. And they're very happy to be asked these questions because it shows that we care. So we have translated all of these tools into the six languages I've mentioned um and highlighted on screen earlier, but we're also providing ways that patients can respond to us by text messaging. Um this also allows us to respond to patients by phone and of course in person works just as well. So a variety of opportunities for patients engaged in this way, even if they do not have access um at home. That's excellent. And I think, well, you know, definitely result in much better understanding of what patients are going through because so many are so hesitant to reach out themselves. So, um, now that there's a way to do that in between digitally, I do think that will result in improved outcomes. Thank you. And um I have another question for dr pose, okay, german regarding the delayed diagnosis. Um, so the question was asked, how would you suggest that a young adult advocates for more testing if they feel something is off but you seem healthy. Therefore PCP does not suggest further testing? Yeah, that's a tough one. And I think that that goes to the core of what a lot of younger adults complain about and it's really having to be more assertive and, you know, going to the PCP but oftentimes having to go and say I need, you know, the um referral and being assertive and that's why there's a lot of training that we provide for that, but it's really pushing for it and it's very tough because again, that's A major concern of our young adults that they're not always taken seriously and it's really advocating and pushing forward. And sometimes that may mean if they're really young. Some of our young adults are 19 and 20 and it may mean getting their family involved if that needs to happen. But again, it's a really tough one. I apologize for the background noise, I have a little dog on my lap and she's like barking. I'm sorry, That's totally fine. Thank you so much. Um and I actually have another question. This one is for dr lolly. Um the question was, would you start a newly diagnosed patient with metastatic colon cancer on oxyCODONE for nighttime pain control. Do you try to start with something less addicting or something like a fentaNYL patch that would have activity over a longer period of time? Yeah. So, great question. I actually feel like there's a couple of questions kind of buried within their, you know, the first is around, I think using opiates period and, you know, first line for someone with cancer and I think it's there's not a one answer. There's not, you know, one answer to that, but I think, you know, whenever I'm talking with someone with cancer related pain, you know, I try to get a sense of, you know what their limitations are in this setting. You know, maybe someone is having so much pain that they can't sleep at night. Um I try to talk, I talk with all my patients around opiate misuse of safety precautions that we take with every patient every time. Things like monitoring the state, um prescription drug monitoring system, doing opiate agreements and I talk about how that's a standard practice, making sure people have naloxone. So I do that routinely with everyone um to address concerns about safety and I will say if the time ever comes and I'm worried that you're using this medicine, not just for managing pain, but for other reasons. Then I'm going to talk with you about it and we're going to address how we move forward. And I feel like addressing that early on helps us if I do need to address it later on. So to your question, if I have someone who has cancer related pain that is impacting their life, to the point that they can't sleep. Certainly you try things like Tylenol as a first step. But for many of our patients that's not gonna work. And so could low dose oxyCODONE at night be helpful. Absolutely. So I don't have any reason not to do that. If it was the right patient and I felt it would be beneficial to your question about something like fentaNYL fentaNYL is a long acting pain medicine and I use it frequently in my patients, but not early on. So for a patient that has never been on opiates that is having just nighttime symptoms. I'd start them on something like oxyCODONE or a short acting morphine or short acting Dilaudid and see what their needs were. And if they started to need it frequently throughout the day, then I would consider something like a fentaNYL patch. Great thank you. Um And I have a question for for dr lu. Um So you know, we often start patients on anti medics and pain medications, other things for neuropathy. Is there a role of referring patients earlier to you for acupuncture to help with some of these symptoms? When is the ideal time? And is there a preventive benefit of acupuncture for some of these symptoms? Yeah, that's a that's a great question actually. Um The uh there are some researches, the studies that not specific on the colon cancer patient in that side. But for example, this uh the general cancer has published one other study. They used the acupuncture as a prevention to the radiation induced the dry mouth and they were studying acupuncture with the radiation at the same time. This is a particular, you know, head neck cancer patient. And what they found is that if they started acupuncture with the radiation at the same time, not wait until later. They finished the patient had much less dry mouth at the end of their relation treatment. So this model actually, in our practice, you know, we do see actually, if picking started the acupuncture early on and they seem to have a better benefit then rather than wait until the symptoms manifested and they come to us and we still see them but it seems that better that for example, nausea vomiting. When is the acupuncture to starting? And we now feel that if we started acupuncture before your chemotherapy, for example, if you have chemotherapy tomorrow and you know, it's going to give your nausea vomiting and if you come in today and get acupuncture and it's very, very much their help to suppress their the nausea vomiting uh side effects. So so I do suggest our patient to do acupuncture in sort of a preventive fashion and go ahead of time. And for europe for example, again that we also feel that probably we don't have a data at this time, but we do have a feeling that if we do Early and things are much better than later on, they have a 40 development that's really helpful to know. And I think the other very important point that you mentioned is that at least in massachusetts health insurance companies are now covering this. You know. Previously that was a big barrier for a lot of patients to access to things like acupuncture. So I do think many of us will start to refer our patients a lot more to acupuncture. Yeah, thank you. Yes, that's the one regarding insurance that Dana Farber at this time. We're not specific directly billed insurance, but we do offer the paperwork and the patient can can, can take the paperwork and bring back to the insurance that they will reimburse them. Okay, great. Thank you. Um and we actually have another question for dr pos. Okay, german, um what kind of support do you suggest or offer to family members? Like spouses of young adults with colon cancer? Yes, Well we do see not only the patient but the families as well. Um so individually we do and we offer programs for the family members. So for the spouses, we're in the process of developing now a program for spouses, particularly if they have young Children because we feel that that's a group that is not always um attended to enough with all those competing demands. So we are developing a program to work more with those spouses. And we offer again um a caregiver group. Um We are developing another caregiver program that we're hoping to make it more specific for the young adults and their spouses or partners with Children. And um all of our programs that we have available. Are there not only for the patient but also for the caregivers? And I should say that in terms of the therapy, we don't just offer it for the patient. We also see the family member with the realization that cancer impacts the entire family. So we do see the caregivers or the partners as well and particularly in sexual health, I always include. And so does dr bober Sharon bober is the director of the sexual health program Dana Farber. We both involved the partners because we realize that it happens, you know, our sexual life for most involves the partners. And so we bring them in as well. Thank you. And then, um, you know, maybe just one last question and perhaps several of you can can chime in. You know, I think palliative care and integrating palliative care into the into the treatment of our young patients is so critical and can definitely improve their quality of life, but it's often so hard to talk about palliative care with a young person who's still very much trying to fight and and maintain hope. Um so Doctor Lolly, maybe you can start how do you approach this? Um, you know, because it's so important to have those conversations, but not um you know, upset the patient and and and have them feel like they're there isn't any hope left in their journey. And I think, I think to some extent what you're also asking about particularly is talking around end of life care, um not, you know, not just symptom management, I just don't care about. How do you talk about end of life care? And one thing I find is I I think our patients think about it all the time, I think, and particularly ones who never talk about it, they don't talk about because they're literally thinking about it all the time. And I find that they'll hint at it. Um Right, so, you know, they'll I'll be tell me about your pain, tell me, you know, I know this pain, but I know it's gonna be bad. I mean I have this cancer, it's everywhere. It's gonna be bad. I mean we don't even know what the future roles. So you know, until they they'll drop these little things and like that and then I find I can explore them. I'll say, you know, I just heard you talk about how scary this pain is and how you're scared about what it means and what comes next. Tell me more about that. What tell tell me what you're worrying about when you say that, you know, I'll pick up on those things and they'll often say things like I hope I hope for a cure. I hope to be able to go back and live my life the way it was. And I also know maybe I won't and so I'll explore that. Right? I hope that too. Oh my gosh, I would be wonderful if you could work the way you were. Things could go back and I agree it could be scary if things don't go the way we hope so. Let's talk about that when you when you think about that, that's a really scary thing. What what worries you the most. Um and I'll use that to to sort of hold both of those things or hope for hope for a long life ahead of them more time with their kids and also what if things don't go that way? What can we do to prepare? And I think patients also are happy to have the space to talk about that. That there's someone who can sit in that really terrifying space with them and explore that because so often their loved ones can't right, They're just too overwhelmed with the ideas themselves. So I think many of our patients want us to talk with them about it. They just don't even know how to broach the conversation. I think that's a really good point. Dr Snyderman anything to add. I did. I was you saw me nodding there because I think that our young adult patients definitely want to talk about it. And to that point, we started a peer to peer facilitated group for young adults with advanced disease at their request. Because they specifically said that they were struggling with all those concerns. You know, they were keeping hope and many of them have been in treatment for a long time and we're still hoping for clinical trials. But they also had this fear. What if, you know, things don't work out. And they found that people that were close to them really, we're not able to go there and it was just too frightening for them. And it's understandable. It's very scary. So then they were sort of um feeling isolated and alone. And the group came at their request. And I can tell you they came to our group sometimes in the hospital. we had one of our patients who was underwent a brain tumor surgery and participated the next day in our group. That's how important that group became because it was the only space she had a young child. She had many fears and did not find that the people in her family were able to go there. You know, some people get lucky and they do have somebody that is able to but for the most part they feel isolated and I agree. It's usually listening when they say something like I'm very scared what's going to happen and then just giving them permission to have that discussion and always keeping that balance with hope because I think that's the critical part that there's still hope and they want to hang on to that. But you could do both. You could still think about what if it doesn't work. But keeping that hope absolutely agree. And you know, with Dr McCleary's program to really collect patient reported outcomes. I've often used some of the responses related to psychosocial well being to, you know, segue into conversations about about end of life if you know, depending on the response is seen on those surveys. Dr McClair I know you see a lot of young colorectal cancer patients as well. Any thoughts on how you've managed these conversations. You know, I think I agree with both of my colleagues. But I would also say there's a partnership in this right? There's a trust that needs to be built and that starts really early. So for me, the palliative care conversation starts at that first visit. It's how I greet, it's how I engage is how I listen, how I paced the conversation and if I'm not providing space because I want to ramble on about all the other things we need to get to the genomics and the trials and all of that. Um and I give the sense that there's only this time to talk about that and then we need to be onto the next check box, then I'm not giving an opportunity to build that trust. Um and so maybe I won't get those little kernels that fall because I've already closed that door and um it's not because there's a lack of willingness, so we have to kind of show that in the way we communicate the way we physically um and verbally kind of position ourselves with our patients. I think the other thing um dr Kitterman you brought up that I really loved was the fact that sometimes um in developmental station stages, patients may regress when they're young because they have to now rely on their family members. So I think it's also remembering the patient's autonomy. So yes, mom, dad, cousins, sister may mention something, but I want to hear from you how you're feeling and what's important to you and sometimes it's even in how you position yourself to the patient that you have primary responsibility for. Um, but again, it starts for me with building that trust really, really early on great advice. Um, totally agree. Right? Well, I think we're at the end of our time. Thank you all so much. This has been fabulous and really educational. I think for everybody there will be a recording of this session available. We will post it on our website and there is an evaluation form that will go out from Bridget. So please fill that out. Thank you all for joining. Thank you. Thank you everyone. Bye bye.
