Chapters Transcript Video Examining Medical Traumatic Stress Through the Lens of Inflammatory Bowel Disease And it is now my pleasure to introduce our speaker for today. So, uh today with us, we have Dr Addison Cunio. She is a pediatric gastroenterologist. She completed her medical school at UC Davis, her residency at UC San Diego and her fellowship at U CS F where she has received numerous awards including the U CS F Society of Helman Fellows Award and the Cystic Fibrosis Foundation, Harry Swatch Clinical Investigator Award and clinically uh works as an assistant professor. Uh an area of focus for her research is pediatric medical traumatic stress and chronic diseases such as cystic fibrosis and IBD. And we are incredibly lucky to have her here with us this morning to talk about examining medical traumatic stress through the lens of inflammatory bowel disease. And with that, I'm going to pass it on over to Doctor Addison Cunio. Thank you so much, Sarah and Christina for organizing this today. I'm really grateful to be here. Um So I'm excited to share a little bit about medical traumatic stress. Um We're gonna use the lens of inflammatory bowel disease because I'm a pediatric gastroenterologist. Um I work over in the West Bay and I've been fortunate to be able to spend the last uh three years or so. Really studying and looking into medical traumatic stress and chronic illness, I have no disclosures. So just to start, we have three key learning objectives. Today, we're gonna want to describe some of the factors that contribute to medical traumatic stress in pediatric patients with IBD and included in this the relationship between medical traumatic stress and diverse um and cultural aspects of patients and families. We are gonna want to identify some of the unique triggers, manifestations and functional impairments that come from medical traumatic stress um in kids with pediatric onset chronic illnesses and lastly identify some of the first steps that you can take towards mitigating, implicit bias and integrating trauma informed and trauma minimizing care into patient encounters. So we're gonna do this through a few different steps. Today, we'll start with a little bit of background about pediatric medical traumatic stress definitions and frameworks. Um Then we'll talk a little bit more specifically about IBD and share some qualitative quotes and to really give you a sense of what we're talking about for these patients. And then lastly, we'll dive into where to go from here. I have um some resources that I wanna share with you as well as a review of some of the trauma informed principles and how we can integrate that with a medical trauma lens. So before we start a little bit of background, just to keep in mind. Um in inflammatory bowel disease is a group of autoimmune relapsing, remitting diseases that occur in the intestine. Uh the diseases of ulcerative colitis and Crohn's disease fall under this category. Um and it typically is onset in adolescence. Um so uh 15 to 30 years old is the typical time when it starts. Um the presenting symptoms are often diarrhea, bloody stools, abdominal pain and growth failure. And as you know, we're talking about on chronic illnesses, it is a lifelong disease. So once you're diagnosed, you have this ongoing. And as part of that patients undergo are current hospitalizations, they undergo surgeries, procedures like endoscopy and colonoscopy, blood draws injections and even things just like having frightening conversations with medical teams. Um they also have some embarrassing and sometimes unpredictable um symptoms. So you can use this uh disease as a case study to start to gain some insight into medical traumatic stress before we get too far into things though. I wanna invite you to take a moment and consider a time silently when you may have witnessed a patient in distress. Think about what you did, what the people around you were doing and how that moment even came to be in the first place. I'm gonna give you a moment to reflect on this. Thank you. Thank you for having that little mini moment of vulnerability as you know, as health care workers helping is really at the core of what we want to do. It's at the core of our being. So it takes us some courage and vulnerability to admit that sometimes in the process of trying to pursue health for our patients, that tr harm and even trauma can occur. Um I wanna share my experience um because this is really how I first moved into this realm and I, and um hopefully you'll find some value in that. Um When I was a fellow at U CS F in pediatric gastroenterology during my first year, uh I was in the endoscopy suite. I was kind of going around about my business. Um, and an eight year old girl was rolled into the room. She was somebody who I had cared for multiple times before she carried multiple chronic chronic, you know, complex G I diagnoses. Um, and the moment that she got into the room, she started to pretty elaborately protest, she was whining, she was pleading and trying to negotiate her way out of the room. And finally she actually started screaming, I know what you're trying to do to me. She was saying she was wrestling her way to the door and her parents were there and there was a child life specialist there and an anesthesiologist there. But it didn't really matter, even though all these people had experience, she still had sheer terror in her eyes. She had done this before. It wasn't her first rodeo and it certainly wouldn't be her last. And it was in that moment that it became really clear to me that while we were trying to pursue health for her, we weren't just causing a little pain or a little stress, but we were really causing trauma and we needed to do better for these kids. It's sometimes it's a little bit uncomfortable to hear or internalize, but really only by bringing light to these experiences, can we start the process of growing towards a system that really does not do harm for our patients with chronic illness? So today, if you are able to in your circumstances allow it, I really encourage you to have a little bit uh to, to move a little bit out of your comfort zone into a place of learning and growth. So we'll talk more detail now about what medical traumatic stress is some of the definitions and frameworks. So first of all, how does somebody end up with medical traumatic stress and and what is it? So you have a patient and they have to undergo some kind of a threat in the case of medical traumatic stress, these are different health experiences. It can be something discreet like an external event where they um have to undergo an endoscopy. Um It could be something like receiving bad news or and something like a blood draw. And in some patients, this event will trigger a pattern of abnormal physiological and psychological responses in the brain. What do those responses look like, well, we can use the adult PTSD literature to get a sense some. So we think of it as these four domains, arousal, which is things like abnormal startle reflexes or disproportionate autonomic responses to small threats, intrusions. These are like like flashbacks or re experiencing nightmares, um negative mood or cognitions which can include depressive symptoms as well as shame and guilt as well as avoidance of potential triggers. Now, we know that not every experience leads to these and not every person is going to have these. So what is mediating the brain's tendency to form these reactions? Well, every person comes into a circumstance with a set of social, biological and psychological factors. And there's gonna be further influence from external factors like the familial support system, the medical center and team support and community level factors. And so together these are gonna be fluctuating influences that are going to help determine if a potentially traumatic experience does in fact become traumatic and cause ongoing symptoms of medical traumatic stress. I'm gonna stress terminology a little bit here because it's really important for us to be on the same page. There's a lot of different words that get thrown around in this area and it's very easy for people to just say I'm traumatized. Well, what does that really mean? So, the National Child Traumatic Stress Network provides a formal definition of pediatric medical traumatic stress. It calls it a set of psychological and physiological responses of Children and their families to pain injury, serious illness, medical procedures and invasive um or frightening treatment experiences. A neighboring um definition is post traumatic stress symptoms. These are the symptoms that fall into the four categories that we just reviewed, arousal, intrusion, negative cognitions and avoidance. So we can start to think about how these things fit together. But before that, we have to think about PTSD. So post traumatic stress disorder is a more stringent criteria that requires symptoms in all four of these categories to be ongoing and for them to have an impact on the patient's life of functional impairment. So when we think about this, we can think of it as a Venn diagram, there are normal responses to stressful life events. A good example of this is a, you know, for me, when I go to get my blood drawn, if I sit down in that chair to get my blood drawn, my heart might start getting a little bit faster or I might start sweating a little bit because I don't really enjoy the experience of getting my blood drawn. Ok. Um And it does cause me a little bit of stress, but once it's done, I'll walk away, I'll go about my day. I don't think about it anymore and I don't have any residual effects of that experience. The next time I have to get my blood drawn. It's not my favorite experience in the world, but like I can do it, I'll go and do it. All right. Um It's not a huge deal. On the other side of the Venn diagram, we know that there are patients who have post traumatic stress symptoms from other experiences outside of their medical experiences. And that can be a wide array of different things. And then in the middle, we have medical traumatic stress, post traumatic stress symptoms that are from medical events or experiences. Um And then lastly, we have PTSD which can, we can see is nestled right here. Patients can come, can have PTSD from something that's not a medical experience or they can not just have some post traumatic stress symptoms, but they can meet the full PTSD criteria from their medical experience. So, um you may want to hold this in mind certainly as you talk to patients, as you. Um and as we go through this presentation today, so there's a predominant theoretical framework that helps us to start thinking about mapping. What does medical traumatic stress look like? This was developed by Anne Kazak. Um and her work was primarily with patients who have injury. She also worked uh sorry with cancer. She also worked extensively with Na Nancy Cassim Adams who worked with Children who had traumatic injuries such as car accidents. Um and she developed this model that helps us to understand and walk through medical traumatic stress over time. She described a peri trauma phase and then an acute medical care phase and an ongoing care or discharge from care phase. And she defined these different trajectories that patients can take. You can see that she reflects that there is some normal escalation in stress symptoms early on for most people. However, pretty quickly, some patients in that acute medical care, time frame will recover and no longer have elevated stress symptoms. Um She defined these as a resilient, a resilient group. The there are others for whom they will develop more sustained and even higher levels of stress. And, and, and, and then in the long term, it may escalate, it may just become chronically elevated or we hope that people recover and come down over time. As we think about this, there are some important things um I wanna bring out. So first of all, she, she highlights here that that the mediator between the event and the amount of symptoms is the patient's subjective response or what we call appraisal to the medical experience. Ok. So this is important in a few ways and, and these things have been shown pretty extensively. So first of all, you have the same patient, they can undergo a variety of different medical experiences and have only one of them lead to medical traumatic stress. So not all experiences in that same patient are gonna lead to medical traumatic stress. Secondly, different people can undergo the same kind of experience, they could undergo an identical experience and some of them may not develop medical traumatic stress, whereas others might a good way of thinking about this, right? Is that many, many patients can be hospitalized in the IC U and actually a number of them can leave the IC U with no residual issues or problems. Um but many will develop ongoing symptoms. Ok. And then, oops, excuse me. So here we go. Lastly, it's the person's appraisal of an event as traumatic that imposes the risk and not the objective severity of the event. This is really important as a medical provider because it's easy for us to say, well, their life wasn't really at risk in this situation. So they shouldn't be stressed or traumatized about it. But what we know is that there's a lack of proportionality between the objective severity of an event and the patients perception of that event as severe and traumatic. And so while you as a provider might be thinking this is not a big deal, patients often will feel a large threat from that experience. We also have to think a little bit about chronic illness in particular when we, when we, you know, as I mentioned, Anne Kazak studied cancer which has a very discreet beginning, um and then ongoing care over time. Um And so when I look at this from a pediatric gastroenterologist perspective, there are some important differences that start to come out. Um She describes this sort of peri trauma acute phase. And one thing that I notice when I take care of patients, is it particularly our pancreas patients have often they come to us with years of medical experiences. It is not just one discrete medical experience, like one moment of diagnosis. A good example of this is our patients with chronic pancreas titus. They often have endured many years of severe abdominal pain, periodic hospitalizations being told that it was functional, being told that it was constipation. Um and um and, and so it's, and so when they come to us, they are already bringing their stress responses from all of those prior experiences. It's not just one acute moment in time. Um Now, that contrasts a bit to inflammatory bowel disease, which does typically have more of a acute onset presentation. That's why inter onsets is in parenthesis. Um The other thing is that while this defines these nice three phases, most of our patients with pediatric onset, chronic illnesses are living in this ongoing care phase. Um So, so they really are being recurrently exposed to potentially traumatic medical events and there's cumulative effect of those events over time. And then the last thing that's not addressed in this model that I think is really important for us to consider is that these patients are having lifelong exposure across the developmental spectrum and across the lifespan. So there are some important differences for us to consider as we know. Um medical traumatic stress is extremely common in patients with pediatric onset chronic illnesses So 30% of patients, if you look overall and meta analyses have some symptoms of pediatric medical traumatic stress. So again, that's using those lighter criteria of symptoms in at least one category that are ongoing due to a medical experience, about 11.5% of patients meet the more stringent PTSD criteria symptoms in all categories ongoing. So imagine that that one in 10 of your patients who have a pediatric onset, chronic illness is living with ongoing symptoms um due to their diagnosis or due to their daily experiences. Um One thing that's important to note is that the science here is still budding. We um when we look at uh these bigger um estimates, you see that there are these wide ranges 9 to 42% in injury, um 8 to 75% in cancer. What does this mean? Why are there such big ranges? Well, the bulk of the the differences between these groups is that the way that medical traumatic stress is measured has been heterogeneous over time, different studies are using different criteria and different measurement tools. Um And that has led to these widely varied numbers. Um when we look more specifically at inflammatory bowel disease, we can see similarly paralleled numbers. So this is a study that I did during my fellowship, we had uh two centers ourselves in Cincinnati Children's and we did a cross sectional study looking at medical traumatic stress, ex uh exposure and symptoms. And kids with IBD aged 13 to 19, we saw that 69% of them endorsed being exposed to potentially traumatic medical events. And that was defined in a very narrow way a time when you were so sick that you thought you might die or a incident that was very frightening or scary. Um, so very common for these patients to be being exposed. Uh, 29% of them had symptoms in at least one category and 3% met the more full PTSD criteria. Similar work has been done in a larger cohort of adults by Tiffany Taft. Um And she looked at a cohort of 100 and 32 adults, um with IBD aged 18 to 80 years old, um and found 32% with medical traumatic stress and 9.6% with IBD related PTSD. So again, very common, um, both in Children and adults, no matter how you cut it, there are some important demographic um, differences that I wanted to highlight. I also want to note that science here is very, um early and we don't have a full understanding of, of um a large cohort uh differences by demographics. However, early studies have shown that non-hispanic um adult, Nonwhite and Hispanic adults with IBD have increased rates. Um There's been some particular look, looking at South and Southeast Asians with IBD showing that they have five times, um more likely to meet the PTSD criteria when they're compared to white non-hispanic adults with IBD. And we also have some, some um signal showing that female sex may be incr may be associated with increased symptoms. So, um there is some work showing that there's association with moderate and increasing stress over the first year after somebody is diagnosed um in, in females with pe with um IBD. And um, and Tiffany Taft's work also showed increased um post traumatic stress symptoms in females compared to males. It's important that we remember the reason that we're talking about all of this is that medical traumatic stress has severe impacts on patients health as well as their general well being. I'll go into more detail about this. But what we have seen is that their functional impairments resulting from medical traumatic stress is um very far reaching in patients lives. We see impacts on health management. We see impacts on their relationships, both with peers, their families, significant others and an impairment and their ability to engage in the meaning the activity that is meaningful to them that might be engaging in school, engaging with friends. It may be being able to work. Um Those things can all be impacted by medical traumatic stress. We also know that there is risk for disease outcomes and association. So um we have seen that medical traumatic stress is associated with increased healthcare utilization, increased fatigue and pain interference um and disease activity. I apologize that that reference is missing. I will add that back in, in the version that gets sent out. So this figure came out of a survey that we published in 2023 where we had looked at health care providers who care for people with pediatric chronic illnesses of all kinds. Um And in that work, we were trying to explore this link between medical traumatic stress and health outcomes and start to understand how these things may be linked. It led to this theoretical model that showed two potential pathways. So one is that medical traumatic stress symptoms can often a I have an impact on what providers recommend um for their patients. So this in some cases can mean deferring treatment, denying treatment. And this is something that unfortunately, we see at times um in our pancreas patients, when they have, when they need a very significant surgery, they are sometimes not candidates um due to the to their medical traumatic stress symptoms, interfering with their recovery process. Um sometimes this will mean stopping treatment or moving to a less ideal treatment. A good example of that in our IBD patients is um patients whose traumatic stress symptoms prevent them from being able to do infusions of medications. Therefore, are put on an injection or an oral medication that may not have as much efficacy. On the other side, we see a pathway through patient and family implementation of medical care plan plans. We we know that medical traumatic stress symptoms can lead to strained relationships between the patients um and their medical care teams and providers. Um And that, that sometimes can, can lead to decreased adherence or treatment, delay and refusal, which in turn may have an impact on health outcomes. So as we d dive a little bit further into this, um I want to share a little bit about what patients have to say. So when, after my fellowship, when I first came to this work, um and I realized how varied those different measurements of medical traumatic stress were I realized that we did not have a patient derived measure of medical traumatic stress where people could really tell, but what these types of experiences encompassed um what their symptoms were like and um everything that was being used to measure medical traumatic stress was generic PTSD screeners. So I wanted to see if we could get a bit more specific by talking with patients themselves. This led to a qualitative study where we engaged people with CF and family members, um and care teams in semi structured interviews and focus groups. And we really explored three areas, the traumatic illness related experiences, symptoms of medical traumatic stress, and then functional impairments that came from that the medical traumatic stress. Um We engaged in a process of flexible coding where we developed analytic codes um applied to them um and then develop, developed this iterative theory development um to come up with a final understanding of this, which we'll share now. So we had a total of 51 participants, the patients aged from 11 to 61 years and they had very extensive personal experience with CF uh we did manage to get a pretty national perspective of patients. You can see the numbers here, maybe a little bit less midwest representation, but otherwise quite um diverse there. And we were able to capture Hispanic and Latino voices. So here you can see that the um how we developed our um our coding allowed us to start to look at these in the, in these three categories. So the index code starts with traumatic illness related experiences. I wanna say coming into all of this, we started to think, you know, when I talk to people, they often are like, what is more traumatic? Is it the blood draws or is it the colonoscopy? Is it the this or this? And what we saw as we went through this was, it's not one procedure that's traumatic, but it's actually again, the patient's perception or appraisal of those events. And what we found was that when an experience had themes of one of these three things, those events were more likely to be appraised as traumatic. So bodily harm, it it falls into sort of the classic definitions, painful, medical experiences, threat that they thought that they were gonna die. OK. But we also found some other things we saw that if there was a threat to their agency difficulty where they either could not control what was happening with their illness. They couldn't control what was happening in encounters or they couldn't control system level factors. Like my doctor really thinks I need this medication, but my insurance company is not covering it, but those were perceived by patients to be traumatic experiences. We also saw that there were identity cha changes. So it may have not been the exact hospitalization that was traumatic for a patient, but it was their change in that understanding of themselves. I had, they would say I had always thought of myself as an exception as somebody who did not ha was exceptionally well with cystic fibrosis. And then this hospitalization came, it wasn't a poke or a specific event within that hospitalization, but it was that change of all of a sudden, I recognized that I am a sick person. Uh um There we go, we saw that the symptoms of medical traumatic stress did fall into these categories of intrusion, avoidance, negative cognitions and reactivity. Um But that there were some really important um specific symptoms that we were seeing. Um a few of these that I'd like to highlight are um treatment, dreads. So people get in the days leading up to care. Um arousal symptoms, symptoms of um nightmares, distress as they lead into care, um avoidance of care, social isolation and then survivor guilt and burden guilt were two really big things that we saw. I'm gonna share some quotes to give this a little bit more life as well. And then, as I mentioned earlier, we see broad reaching functional impairments that include adherence, provider, relationships, familial and peer relationships as well as work and hobbies. So just to bring some light, I wanna share some quotes, um we think about bodily harm. Oh, and I do quickly wanna just say it. So I used our framework from patients with cystic fibrosis. And here I'm going to share quotes both from my own work with cystic fibrosis patients as well as from some of the qualitative work that Tiffany Taft has done with IBD patients because what you'll see is that there's parallelism between what these patients are experiencing. So in the realm of bodily harm, Tiffany Taft has a quote. There, there was this patient is talking about hospitalization. There was the first couple of days that I was convinced I'm not making it out just like deep down. I would never admit that I never told my wife that I would never tell anyone. You know, I was just kind of like coming to accept, ok, this could be it. And then our cystic fibrosis patient, it was very disheartening to read that my life expecting the was 19 years old. I was 19 at the time. That was traumatic without the internet your whole life. That was the first time my parents never told me that um I'd have a shortened lifespan. So this last quote, one of the things that it ha that it brings out is that illness related experiences that are perceived to be traumatic don't have to actually happen in the medical setting. They can happen at home and they can happen and they can be something outside of the medical providers direct, um, care. When you think about agency, we have an ID IBD patient quote, you're out of control of your own body, not out of control of the situation, but out of control of your own body. That's where it gets traumatic itself. Very similarly. In cystic fibrosis patient, I never felt like I had a choice to get up and leave or to say, hey, we've got to stop or anything like that. I never felt that choice. So in both of these, we see one, if the patient really talking about the unpredictability and lack of control over their body, the fact that they could suddenly get much sicker without any warning. And then in the other, the, the way that this can happen in medical situations where people feel that they don't have um agency within um uh experience with their health care provider. And lastly, I wanna share a um a quote from a patient with cystic fibrosis who was diagnosed later in life. He was in a um missed diagnosis and he said I've been coughing out mucus all the time. I've been having digestive issues, but it wasn't until there was a name for it and I realized that I was labeled in that moment, my opinion of myself changed. So I'm gonna share a few more quotes. Just bear with me. But I think that really you learn the most hearing directly from the patients themselves. So, intrusion symptoms, my surgeon told me my intestine dissolved in his fingers and they were icky. That's a really freaky thing to think about going out on inside of you. I think about it all the time. Talk, if you wanna talk about nightmares pulling like in my intestines out, I get that. I get that nightmare after the transplant. Any time I closed my eyes, I had real bad nightmares. Just vivid visceral, violent things, cystic fibrosis, patient avoidance. When I started feeling a panic attacks. I, I think that the scariest part was I hated going in public because I just con was constantly nervous that I was going to feel nauseous or need to throw up or like use the bathroom in a public space. And I tried to avoid a lot of public stuff or just leaving the apartment I was staying in and then a cystic fibrosis patient describing her parents trying to get her to get labs. I would physically try to escape one time I got into the elevator before they could catch me when we were trying to get me to do blood work. And I, I just tried to run away. So you can see how these symptoms can impact different parts of people's lives and yet still come back to their medical experiences, negative cognitions. Do you think about killing yourself when you're in the hospital with an NG tube for days, you'd be an idiot not to think about that prone to disease patient, uh cystic fibrosis patient who had received a transplant. I was just like thinking like, how could I dare be suicidal when this person, the lung plant transplant donor gave me their life. And then that made me more depressed and more suicidal and then lastly reactivity. And one of the things that's important particularly for our male patients is to remember that a big part of reactivity is anger. So this patient says, just opening my eyes in the morning and already I could feel I could just like feel anger coursing through my veins. I hated everyone. Everything set me off. That's all I felt. Just anger every single day. Another patient, if my lung is collapsed, am I going to be somewhere where I'm going to be safe? Am I going to be able to get the care that I need? It's, it's going to happen really suddenly it's time it's going to happen in a matter of minutes then like who's going to help me get to the hospital? Is it was like all of these, what if scenario is playing out and how, what I would do and how I would react So that last one is a really good example of, of what we termed symptom panic or you can call catastrophizing, right. Patients will have one small symptom and will lead them down this trail of thought. So a few things that we learned from this qualitative work, perceived traumatic medical experiences were varied. They could be discrete medical events, but they also could be chronic and daily stressors. They could be events that happened in the medical setting, but also things that were going on outside of the medical setting related to their illness. Um In addition to bodily harm, we saw that there that um potentially traumatic illness experiences um were often characterized by a loss of agency or control and shifts in how patients identified. And then we saw that the symptoms of medical traumatic stress could be uh broadly categorized within the DS M five post traumatic symptoms domains. But that there were some really important chronic illness, specific manifestations of these symptoms. Um and got draw led us to draw the conclusion that these needed to be more specifically evaluated in measures of medical traumatic stress. We also perceived a broad range of functional impairments. So where do we go from here? We've established that medical traumatic stress is common and that there are specific considerations for this. Um But what do we do as providers? So there's a few things. First and foremost, we need to avoid our biases, right? We need to know that we do. We don't yet have a good risk assessment model. So we don't yet know who is at the most risk for developing this. We have some demographic um considerations. We have some signals of possible psychological constructs such as coping difficulties that may be contributing. But we don't have a good way of systematically assessing who is at the most risk. So the best that we can do is avoid, avoid bias. And remember the three big truths that the same person can undergo different experiences and have just one of those lead to medical traumatic stress. So remembering that while your patient who has been through XY and Z before may have something that seems not like a big deal to you. That could be the thing that tips them over remembering that different people can undergo the same kind of experience and some may develop symptoms whereas others may not, right. So remembering that you may do the exact same preparation for 100 patients for the procedure that you do with them and some of them will likely walk away with stress despite that. Um And so it's important to follow up with them to be have it be part of a continuing conversation. And then remember that it's the person's appraisal of the event as it is traumatic that imposes risk. Well, how can you learn more about their appraisal of the event you can ask them? Right. That's really the only way to know how they viewed the event. So broadly, we can think of trauma informed care as defined by the National um substance Abuse and Mental Health Services. Um Samsa. So they use this definition with the four Rs in it, a program organi organization or system that is trauma informed, realizes the widespread impact of trauma and understands potential paths for recovery. Recognizes the signs and symptoms of trauma and clients, families, staff and others involved within the system and re responds by integrate, fully integrating knowledge about trauma into policies, procedures and practices and seeks to actively resist re traumatization. It's a big deal and I'm gonna add a little bit to it. So if we think about what a tr start to imagine what a trauma informed medical care would look like for patients with pediatric onset, chronic illnesses, we have to remember that we orchestrate many of the illness related experiences that patient have and we know that each of these is potentially traumatic. So as a system, we're in a position of power to influence this. And so because of that, I would argue that we have both the responsibility to embrace the general um principles of trauma informed care. And we have added responsibilities given the potentially traumatic and essential nature of the services that we provide. So as we think of this, we know that yes, we must resist re traumatization. Um But we also need to actively work to prevent medical um traumatization. We we need to um screen patients, right? Recognize, recognize trauma, we need to screen patients for broad traumas such as adverse childhood experiences like abuse and neglect, um household dysfunction. And that work has been pioneered by Doctor Wong here at U CS F and CHO. Um um But we also specifically need to be thinking about screening for symptoms of medical traumatic stress for these patients who are very high risk. And then lastly, we need to respond. So, in our, we need to respond broadly in all of the things that have been advocated for through the aces of wear movement. But we also need to respond more specifically around medical traumatic stress. So in that prac in that so context, it means in our practice, recognizing signs and symptoms and medical traumatic stress in those patients that we are interacting with and responding ideally with having availability of medical traumatic stress treatments. So what might this look like? Because again, this is a tall bill. Well, we're fortunate that um Anne Kazak has also helped us to think broadly about how we might start to approach this on a systems level. She has this model, it's called the pediatric preventative health model. And she really developed it for oncology patients to give us a sense of how we can go about approaching medical traumatic stress. Um and she defines these three levels universal. So something that needs to happen for all patients and families targeted those who have acute or elevated distress or they have some risk factors for stress and then clinical treatment for those who have severe and escalating or persistent distress. Um I worked with one of Anne Kazaks um Mentees Megan Marsac and we developed a more specific version of this um that was recently published as we start to think as a care team, what this might look like. And so in the universal category with patients with CF as an example, we can think that all people with CF, all families and people with CF and all care team numbers need some general blanket things across the board. Universally, there's opportunities for care teams to be educated for patients and families to be educated for risk factor screening, for patient symptom screening and for family symptom screening, which I want to acknowledge that we did not talk a lot today about families. There's a lot of great work out there and a lot of work to be done about families who play a very key role in all of this um care teams in order to do this sort of thing would need to start thinking about developing clinic wide word workflows that minimize trauma exposure, integrating annual patient and family, medical, traumatic screening to stress screening into workflows and adding patient education around this as part of the standard of care so that patients know and families know this is something that can happen and we should be doing something about it at the onset. In terms of the targeted um group, these are folks, right, who either have risk factors or mild symptoms and those patients need additional support from care teams. They need things like child life to be available. They need their, their physicians and their, their health care teams to be adjusted, to be considering what might um safe adjustments b for care that could accommodate these, their mental health needs. Um We want them to recognize and build on strengths and to be able to monitor patients for symptoms. And then lastly, patients who have severe or persistent symptoms do need to be sent to a medical um health mental health provider. Ideally someone who has some expertise in addressing this is particularly in patients with chronic um conditions. And then the last thing and I think that this is a major challenge for care teams is that we need to be able to establish a clear communication pathway to facilitate collaboration between mental health providers and the CF care team. So you'll see many different mo models of this depending on what your clinics are like. Um uh And there's a growing interest in having um integrated mental health care within clinics in our IBD clinic, we do have a psychologist. Um But as we talk to patients about the implementation of what a screening and referral type of system would look like we're seeing the, there are some major challenges that we're going to need to navigate one of which is on them, wanting to understand what the impact of these, the sharing the information of their symptoms is going to be on their care and with their care team. So that's an area that feels like an easy bullet point. That is actually a major challenge for teams. So the big picture is that this is gonna require a systems approach. Um We have to remember that both systems and individuals orchestrate many of the illness related experiences that then become a tree praised as um as traumatic. Um And so you can't really leave it up to chance because these people have so many interactions that the trauma informed care needs to come from every single piece of the health system. Um There are a lot of challenges. One is that um available resources have not been rigorously studied. Um And so while there are several that I'm gonna share with you, we do not have clear um evidence for, for them. Um And then there's also a uh some more reasonable gaps um in the resources that are available. So there are a few centers, a few things that I want to really make sure that you're aware exist as, as potential resources for you and for your team. Um This is a bit of an informal compilation that I've put together. It has uses some of the U CS F resources as well as um external ones. Um If people have more, please feel free to share them. Um Healthcare toolbox.org is a great place to start for provider w learning. They have this um model that they use. Um that is called the idea being that after the ABC S of a trauma um that we think about the DEX. So we work to reduce distress. Um Look at a pretty emotional support and remember to engage the family. Um They have a number of very helpful handouts both on their website and they're linked to the National Child Traumatic Stress Network Provider, Toolkit. Um The Job Center for Traumatic Stress actually will meet with you if you're looking to try to figure out how to integrate some of these practices into your um into your clinic. Um And they can help you try to navigate that. Um And then the A BP road map to resilience, emotional and mental health has less medical trauma specific um resources, but some great resources around mental health and chronic illness in general. For family awareness, there are a number of um mo modalities that um we you should be aware of. So one is that actually you guys over in Oakland have a really nice video series. Um For, for that is like a cartoon. This is a picture of it. Um And there's about, I think it's a total of three short cartoon uh videos um that can be watched by patients and families, particularly in the setting of hospitalization to learn a little bit about what medical traumatic stress is and what they can be looking out for. Similarly, the National Child Traumatic Stress Network has some patient facing activity, um handouts and activities. Um And then after the injury.org is very specifically gained to patients who have had uh you know, a injury um such as a car accident, but it gives a really nice way for parents to be able to check in on their patients symptoms and know what to be looking out for. And then lastly, seely um is a um geared towards the younger subset. Um It's similar to what a lot of our child life folks use um to engage the the Children in medical play. Um Remember that we should be thinking about prevention, engaging child life services when possible. Um And then there are some additional um online resources. So the Meg Foundation for Pain has a really nice poke plan. So for kids who specifically have procedural anxiety around pokes, that can be a really good resource. Um Stanford has a website called Imagine action. Um This is a self hypnosis um website that actually has targeted um modules for patients around general anxiety, but also specifically medical anxiety and procedural anxiety. Um that actually has some evidence base behind it, which is really nice. And then again, these are some examples of um the activities um that the child traumatic stress network has um for patients to help them process. Um on the horizon, I'm almost in time here. Um on the horizon. Um you know, we are working on the development of a chronic illness specific screening in um instrument, both for exposure to potentially traumatic medical events and to for medical traumatic stress symptoms. That is almost here. Um Thankfully, um we're looking at some more longitudinal analysis of risk factors over time to be able to help, to build those models and understand who is at biggest risk. Um And then obviously, there's a lot of work to be done to understand how on a large systems level to approach this. So I incredibly thankful to first and foremost, to the patients and families and providers who've shared their stories with us um who have entrusted us with the pursuit of better medical care for these kids. Um And then of course, very thankful to all of these folks um for their mentorship and guidance and I, I'm going to end my show so I can see your faces so much. Um I, we do have a question about a particular slide if you're able to reshare for just a moment. I'm so sorry about that to show the slide right before family awareness with the resources including the children's Hospital Philadelphia, if you're able to put that back up. Yes. Wonderful. Thank you. Um In the meantime, we got a couple of questions. Um The first one that we have is you know, it sounds like, you know, um one of our providers takes care of a lot of patients with Down Syndrome and autism and is wondering if you have any advice about how to adapt to the recommendations that you've given for a population specifically with intellectual and developmental disabilities, particularly around asking what their perception of events is and their screening for trauma. Yeah, this is a great question. Um First of all, are you guys able to see that slide? Ok, great. Thank you. OK. Um So, you know, there has not been work yet on this. Um And, and there is a lot to, to be done um around um trying to minimize trauma for these patients. We, the main main point of work that's been done for patients with intellectual disability down syndrome has been on caregivers and caregiver, traumatic stress um which is obviously an important mediator and an important factor. As we care for the child, we know that their family is a huge part of that. Um But there are not that I know of um specific resources or modalities for being able to assess perception of um events of more objectively um with patients who are unable to communicate most directly to us. And it's definitely one of our major challenges even. Uh uh So in these, in the interviews that we did, um you could see that as we got the low um really below 14. Um it is very hard for kids to share their perception of events. Um And yet we know that this starts very early on. And so, um Megan Marsac is one of my collaborators is really looking at this um starting to go into the lower ages and thinking about more systemic systematically how we can address this for kids um in a way that does not rely solely on parent report. Um because um because it's a, it's definitely a challenge. Um What I will say is um there's a lot of uh what we have as our best tool as clinicians is leaning on parents and listening to them and acknowledging them for both two reasons. One is we know that their response is going to impact the patient's response. So we do need to tend to the parent response and what their experience is. And then secondly, they know the patients best. And if we can respect that, um we can really have a universal practice of respecting that um of asking the parents, how can we make this best for your child that can make a huge difference. Um But that's, that's the provider in me. That's not the scientist in me. We don't have great scientific data around it yet. No, thank you. And that actually leads in really nicely to the next question, which is how do you manage the balance between parents' traumatic symptoms of having a child who's hospitalized and or chronically ill with the patients? Um experience of trauma, sometimes they can be at odds or exacerbating of one another. Absolutely. Absolutely. So, you know, this is the, the sort of thing that I really rely on the child life folks to help with. Um the biggest thing outside of the hospital experience because a lot of my work is out outpatient is taking the time to check in with the parent in a way that really acknowledges this. Um And so oftentimes I enter this conversation using the word stress because trauma can sometimes feel a little bit overwhelming for people, right? Um But usually just a few empathetic statements can open up that door to really gaining some insight. So oftentimes, I'll just say this sounds like it's been really stressful and that can open the gate floodgates um for a conversation around this. Um And most of the time if you tell a parent, you know, you, you know, you need to calm down, you know, that this is impacting your kid, you know, they're not gonna receive that. Well, you have to recognize that part of what you're seeing in a parent is their own trauma response. So you need to tend to that as a trauma response. Um A big part of that is not taking it personally. And this is something that I think as a pro as providers really needs to be addressed and we need training in um because we like we work so hard, we want the best for our families and our patients and then we go in and we just get like a wall of yelling sometimes and it's really hard. It's really easy for us to slip into like, well, I'm crying and I'm doing this and remembering and taking that space to remember. It's not about you. This is their response that they're having because this is really hard and starting to figure out how can I tend to that response and you know, a little bit of putting the parents mask on before the kids mask on the airplane, right? Um Being able to get them because if you can get people to a place where you have a good rapport and understanding with them, they often can come around to start to understand that their response is impacting their kid like they usually know that. Um but they're having that heightened response for a reason. So the good thing is there are good resources for parents. Um The National Child Traumatic Stress Network has them on their website. They have a whole litany of parent resources. We also have really good resources within U CS F within support for families um to be able to help parents. So, you know, if you can, if you have a parent and you're, you really see like this seems like a trauma and a stress reaction. Please talk with your social workers, talk with your child life supports and try to get them as much support as as you can because um there, there is a lot that can be done on the parent side and that's definitely a mediator and overlying factor for all of this. Thank you so much for this entire talk. We really, really appreciate it. Absolutely. It's my pleasure if people, I realize I did not put my contact information there, but I will put it into the chat if anybody has questions, comments, things that they want to talk about, um feel free to email me. Um I'm always happy to chat more about it. Thank you so much, Doctor Cunio. We really appreciate your coming on and uh giving us this wonderful brand round uh on behalf of the U CS F Benioff Children's Hospital, Oakland C and E Committee. Thank you. Thank you. Thank you again and we'll be signing off. Thanks, everyone. Have a great day. Bye. Created by