Hello, and welcome to today's Journal Club Critical Care Medicine webcast. The webcast hosted and supported by the Society of Critical Care Medicine is part of the Journal Club Critical Care Medicine series. In today's webcast, we feature two articles from the August issue of Critical Care Medicine. The webcast will be available to registrants on demand within five business days. Log into mysccm.org and navigate to the My Learning tab. My name is Tony Gerlach, and I'm a clinical pharmacist at The Ohio State University Medical Center in Columbus, and I will be moderating today's webcast. Thank you for joining us. Just a few housekeeping items before we get started. First, during the presentation, you'll have the opportunity to participate in several interactive polls. When you see a poll, simply click the bubble next to your choice. Second, there'll be a Q&A session at the conclusion of the presentation. To submit questions throughout the presentation, type into the question box located on your control panel. Third, if you have a comment to share during the presentation, you may use the question box for that as well. And finally, everyone joining us for today's webcast will receive a follow-up email that will include an evaluation. Please take five minutes to complete the evaluation. Your feedback is greatly appreciated. Please note, this presentation is for educational purposes only. The material presented is intended to represent an approach, view, statement, or opinion of the presenter, which may be helpful to others. The views and opinions expressed herein are those of the presenters and do not necessarily reflect the opinion or views of SCCM. SCCM does not recommend or endorse any specific test, physician, product, procedure, opinion, or any other information that may be mentioned. And now I would like to introduce today's two speakers or presenters. First is Dr. Katrina Halshul, who recently completed her PhD in sociology at the University of Michigan. Her research examines inequality in and after critical care, including communication and decision-making in the ICU, as well as the impact of social determinants on the recovery from critical illness. In September, she will start as a post-doctorate fellow at the Center for Clinical Management Research at the VA in Ann Arbor, Michigan. Next is Dr. Garrett Kime, who is a senior pediatric critical care medicine fellow at the Children's Hospital of Philadelphia and is a research fellow in the Pediatric Hospital Epidemiology and Outcomes Research Training Program. Boy, that was a mouthful. He is also a Master of Science in Clinical Epidemiology candidate at the Perlman School of Medicine at the University of Pennsylvania. Dr. Kime completed his undergraduate education at Penn State University in medical school at Drexel University College of Medicine. He then completed a general pediatrics residency training at the Children's Hospital of Philadelphia. Dr. Kime's research interest includes pediatric acute respiratory distress syndrome and long-term outcomes after critical respiratory illness in children. Thank you, Katie and Garrett, for joining us today. Before we begin, could each of you tell us if you have any disclosures to note? Katie, you can go first. No, I do not have any disclosures. And Garrett? No, I do not. Perfect. Now, I'll turn things over to our first presenter, Katie. Hello, everyone. I want to thank you to SCCM for giving me the opportunity to talk about an article today entitled Financial Practicity After Acute Respiratory Distress Syndrome, a National Qualitative Cohort Study. And I also want to acknowledge my co-authors, Claire Seagworth, Lee Kampis, Terry Huff, Mark Moss, Joe McPeak, and Jack Waschner, as well as the National Heart, Lung, and Blood Institute Petal Network, without which we would not have been able to do this study. So, first, I want to take a moment to define financial toxicity. Financial toxicity is a concept first developed by Zafar and Abernathy in the study of advanced cancer and cancer treatment. They defined it as the objective financial burden and subjective financial distress resulting from out-of-pocket costs associated with medical treatment. They thought of financial toxicity as similar to the experience of physical toxicity from aggressive cancer treatment, which diminished patients' quality of life and could impede the delivery of other high-quality care. Drawing on their work, we hypothesized that financial burdens may also diminish quality of life after critical illness and may impede patients' recovery. So, what do we know about financial toxicity after critical illness? A couple of my co-authors, Joe McPeak and Jack Waschner, along with others, performed a systematic review and meta-analysis of studies on return to employment globally following critical illness and found that there was substantial variation in return to employment, but that it remained an issue even 12 months after critical illness. So, what they found was that at 6 and 12 months, just over half of previously working survivors of critical illness had returned to their jobs. And what about financial distress? Less work thus far has looked at financial distress after critical illness, but an excellent study done by Nita Kandewal and Terry Hopps at the University of Washington, along with others, explored patients' and families' experiences after critical illness and found that survivors reported high levels of financial stress. They asked respondents, what are the most stressful things in your life right now, and allowed them to list up to three answers. They found that just two weeks after discharge, approximately 3 out of 10 patients and family members reported financial stress as a top three stressor, and further, this stress persisted for both patients and family members. At 6 months, approximately 4 out of 10 patients and family members reported significant financial stress. Other studies, which have allowed patients and families to speak broadly about their post-critical illness experiences, have noted concerns about out-of-pocket expenses, housing instability, and bankruptcy. So, we've sought to further explore the experience of financial toxicity and the particular burdens experienced after critical illness using semi-structured interviews with patients from around the United States who had acute respiratory distress syndrome. They had been enrolled in the NHLBI randomized control study of neuromuscular blockade, and that citation on the lower right there, you can check out if you'd like to know a little bit more about that trial. We enrolled participants from the larger trial who had been randomized between December 2017 and May 2018, who were still alive, spoke English, and did not have significant speech impairments. Forty-six of 79 eligible individuals completed the interview, and in the table on the left, we have an abbreviated version from the table in our appendix, which compares respondents from this sample to non-respondents. As you can see, respondents and non-respondents are largely similar. The proportion who are female, the proportion by race and ethnicity are largely similar. If you look at the bottom there, you can see that the participants that were in the intervention versus the control of the trial were very similar, and their disability scores at six months were also comparable. I am just finishing my PhD in sociology, so I can't comment on all of the clinical measurements, but I have been told by my excellent clinical co-authors that there were not significant differences across clinical factors between respondents and non-respondents as well. So, to get at the experience of financial toxicity, we asked, many people say that a serious hospitalization can have a big financial impact on them. Have you had any money problems since you had ARDS? Can you tell me about those, and who or what helped you deal with those problems? So, before I give you guys the results, I want to ask what your experience has been with talking about costs after a critical illness. So, I want to ask, how often does your ICU provide anticipatory guidance counseling about costs related to post-critical illness care? The options here are never, less than half the time, more than half the time, or always. So, with the results coming in, so far, we're seeing 100% respondents are saying never. So, in other work, I spent a big chunk of the past two years in ICUs. I would say this is largely in keeping with what I have observed. But, unfortunately, regardless of whether or not costs sort of come up, either during or prior to discharge from critical illness, what we found was that many patients are experiencing financial burdens following their ARDS. In our sample, 31 out of 46 reported a financial toxicity and related distress. So, where did these burdens primarily arise? Obviously, a major one was medical bills and related insurance coverage issues. One 47-year-old male patient told us, we have to pay 20% of the bill. So, the bill was over $60,000. Again, it was very good hospitals. I mean, from the first and second hospital, as well as going to rehab, but I was shocked by how much that bill was. And, relatedly, a lot of patients who reported insurance coverage issues found that there was complexity both around what their out-of-pocket costs were and whether or not they could afford them, but also the shifting nature of those things. One patient whose illness occurred at the end of the year found that he had one set of coverage for the beginning of his hospitalization and another set of coverage after, after the latter part of his hospitalization. Others described changes in their insurance because of their ARDS and their inability to return to work, either transferring to a different private insurance coverage from a spouse, to a public insurance plan, or simply maintaining their coverage through COBRA also created complexities and frustration. The other primary source of burden that patients reported was around income losses. One 55-year-old male patient told us, I had to sell my business. I'm on disability now. I owned a fire prevention company. We used to clean the kitchen exhaust systems in restaurants throughout the state. Yeah, I had to sell everything. And paying off these bills and dealing with income losses led to savings depletion for many participants. A 49-year-old male patient told us, unfortunately, the time away from work, that is going to take me years and years to fix. It's probably set me back four or five years in terms of his plan for retirement. A female patient who was unable to return to work told us, yeah, we just creep by. When asked if it had affected their savings, she said, oh my gosh, yeah, we have none of that. That's gone. Now, not all patients that we spoke to did report financial burdens. Again, 15 out of the 46 did not report experiences of financial toxicity. And they described an interesting set of factors as protecting them from financial burden. The first was a few people who said, because they were not working before having ARDS, they didn't have to deal with subsequent income losses. A male patient told us, I can see some people, like if they were working and then they hit them and they had to lose their income, that would be an issue. But I was already on disability because of my Parkinson's. Interestingly, he added that the shift from his previous income to disability income when he was diagnosed with Parkinson's had been a major adjustment, but his ARDS did not provoke another financial adjustment. Another group of respondents mentioned that public health insurance benefits really limited their out-of-pocket costs. This didn't mean that public health insurance was without problems, but primarily that they did not have these major medical bills if they were on public health insurance. One participant told us that his co-pays after newly qualifying for Medicaid following his illness were now $1.25. Then a very small group of people simply described really generous insurance and workplace benefits. A female patient who was 61 years old told us, my hospital bill is $2 million, millions. He's paid $750. So my husband worked at the university for 35 years and we have excellent insurance. He's paid $1,000,000. So my husband worked at the university for 35 years and we have excellent insurance. But unfortunately for the 31 of 46 respondents who did report financial burdens, they also reported pretty terrible consequences from these financial burdens. First, a lot of them reported emotional distress. A 69-year-old patient reported that the financial burden was very, very upsetting and it just makes your blood pressure be out of whack. It is very stressful. Others reported that they experienced limited follow-up in terms of their recovery and in particular access to rehabilitation services. A 51-year-old male patient told us physical therapy was very short, a couple of weeks maybe, then it was over and I just laid around basically. My insurance didn't cover anymore, so they had to cut me. Respondents also reported having to rely on others to deal with financial hardships. One 49-year-old male patient told us, I mean, my house is owned by my father-in-law, so that's why we didn't lose the house. He advanced money that kept us afloat. But, you know, I hate being in debt to the man because he's my father-in-law. He was not alone. Patients reported turning to siblings, children, parents, their spouses having to take on additional financial burden in order to deal with this financial toxicity after critical illness. Unfortunately for patients who didn't have financial or social support, they reported experiencing some pretty terrible material hardships, including housing instability and other effects. One male patient, 48 years old, told us, I still may lose my car because when I was out, I lost my bank account because my bank account had come overdrawn. You know, after that follows the depression, the anxiety. It's just a snowball effect. And he was not alone in reporting multiple consequences of financial burden and toxicity. So I've shared a lot of relatively upsetting stories and data with you. But before I ask, sort of, and turn to a discussion of what we can do about this financial toxicity, I want to ask another question of you all, which is, how does your hospital, or I'm sorry, does your hospital have any post-ICU clinic follow-up or peer support program for patients recovering from critical illness? And your answer choices are yes, no, or unsure. All right, so this is pretty heartening, actually. About half of you, 44% said yes, 44% said no, and 11% said unsure. So for those of you who do already have some post-ICU follow-up in place, this is a potential opportunity to start finding ways to address financial toxicity. Joe McPeak and others in Scotland added a structured social welfare consultation to their post-ICU follow-up, and they found that over a third of participants took advantage of this welfare consultation. Some of them took advantage of it multiple times, and they were able to link people to housing support, welfare support, as well as caregiver assistance programs. So this is a potentially really useful opportunity if you have one of these clinics or if you're looking at implementing one of these clinics. This is a place where you can screen patients for financial burdens, and you can help them find available assistance. The key there, of course, being available assistance, which leads me to, I think, a really important part of understanding what we can do and what we should do. It would be remiss of me not to consider these findings in light of the COVID-19 pandemic. We can anticipate that there will be hundreds of thousands of new ICU and ARDS survivors because of COVID, but also that the pandemic's broader impact on the economy will be relevant to experiences of financial toxicity. The Kaiser Family Foundation conducted a survey in early May. They found that approximately 78 million people were likely in a family that had experienced job loss as a result of the lockdown and pandemic. Of those, 61% were on employer-sponsored insurance, so they were on insurance linked to their employment. And after their job loss, there were 26.8 million likely newly uninsured individuals due to loss of that employment-sponsored insurance. This means that survivors and their families may be dealing with the anticipated financial toxicity effects described in our work, as well as multiplicative burdens from both patient and family job insecurity and loss of healthcare coverage or access. COVID-19 pandemic presents an opportunity while these issues are gaining increased attention, but also a necessity for innovative approaches to ARDS recovery and social policy for critical illness survivorship. I look forward to talking more about financial toxicity and what next steps could be in our discussion. And for now, I will turn things over to Garrett. Thanks, Katie. Both reading and listening, that's really important work and both fascinating and devastating at the same time, so I'm excited for our discussion. As I said earlier, I'm Garrett Kime. I'm one of the critical care fellows at the Children's Hospital of Philadelphia. I'm honored to be asked by SCCM to present our work looking at the development of persistent respiratory morbidity in previously healthy children after acute respiratory failure. I want to thank my collaborators, especially two of my mentors, Dr. Nader Yahya and Neil Thomas, who were instrumental in this work. I additionally want to acknowledge my co-fellows who are covering for me since I'm actually on clinical service this week, and they're holding the phone so I don't have to run away to an emergency. All right. Since I know not all of you are pediatricians, I'm just going to spend a little bit of time discussing the epidemiology of pediatric acute respiratory failure and pediatric acute respiratory distress syndrome, and then I'll move on to focusing on the study at hand, talk a little bit about the study cohorts, our results, some of the important limitations, and then how all of that ties together into the clinical implications and future directions of this work. Pediatric acute respiratory failure is common. Respiratory illnesses are the most common reason for admission to pediatric intensive care units in the United States. The recent party study that evaluated the PLEAP definition of pediatric ARDS found that just over half of patients in intensive care units at any time are either on noninvasive or invasive mechanical ventilation. Now, of course, not all those children are on this support for primary respiratory causes, and some of these children are chronically on respiratory support, but putting these two things together, pediatric acute respiratory failure is a significant burden and really warrants a lot of discussion and thinking. Just like an adult, pediatric acute respiratory distress syndrome is a severe form of hypoxemic respiratory failure. Now, because we always say that children are not just little adults, we had to sort of make the definition our own, and the key difference in definition that I want to highlight is how we both define and categorize pediatric ARDS. Instead of utilizing PF ratios, we utilize the oxygenation index, which in addition to a patient's PaO2 and FiO2 required, includes in its calculation the mean airway pressure they are on. I highlight this because it will become pertinent later in the talk. Thankfully, since the earliest epidemiologic real discussions of pediatric ARDS, mortality has gone down. Those initial descriptions in the early 90s found mortality rates in excess of 50% to 60%, but most recent studies, including that party study that I just mentioned, have found the mortality to be somewhere in the high teens to low 20%. Now, just like in adult ARDS, as the severity increases, the mortality also increases. Putting all of this in context, the general mortality from pediatric critical illness has been reported somewhere between 2% to 4%. Pediatric ARDS is still a very mortal condition, but it's improving, and we have many survivors that are living long lives after this, yet little has actually been studied or known about what happens to them after their index hospitalization. Before I discuss the little that is known about their morbidity, I wanted to ask all of you this. Do you discuss potential post-discharge morbidity when counseling patients or families with acute respiratory failure or ARDS? Never, rarely, sometimes, frequently, or only if you're discussing tracheostomy. Great. That's a pretty easy, evenly split between never, rarely, and sometimes. I think that that has been my experience as well, that it really depends on the provider, and it's hard to know what to say to families, and maybe the limitation of not having that much knowledge actually makes it difficult. I'm surprised. I think the most easy people to discuss is if you're discussing tracheostomy, but maybe that's one of the big differences between pediatrics and adults, that tracheostomy decision is a little different. What is known about the morbidity after acute respiratory failure? Well, our group here has previously looked at survivors of pediatric ARDS, and we found that a quarter of patients were discharged to inpatient rehab. We also found that a quarter of the survivors had what is called new morbidity, and new morbidity utilizes the functional status scale, which is akin to an activities of daily living setup for pediatrics that can be used across the full spectrum of ages that pediatricians care for, and this new morbidity is a change from baseline to discharge or whatever time point you're interested in of three points or more, so a pretty significant functional change for these patients. A separate single-center cohort study from Jagiela and their group looked at all children with acute respiratory failure admitted to their ICU and found that just under 9% of patients had new morbidity at discharge. A quarter of these patients required a new medical device at home, which was either the need for supplemental oxygen, suction, ventilator, BiPAP, or feeding, like tube feeding or a feeding pump, and of these patients in the subsequent two years following their index hospitalization, half were readmitted to the hospital, and just about 75% of those readmissions were actually back to a pediatric intensive care unit. Now, for both of these studies, they included both healthy and children with chronic comorbid conditions, so what always comes up in a lot of this work is, what is the contribution of the actual episode of acute respiratory failure, and what is contributed by their chronic conditions? That leads me to the aims of this study. We wanted to describe the frequency of post-discharge morbidity in the year following acute respiratory failure that required mechanical ventilations, and we also wanted to determine predictors of this persistent respiratory morbidity. We limited the cohort to previously healthy children younger than 24 months of age who were invasively mechanically ventilated for a primary respiratory cause of acute respiratory failure. We defined previously healthy as children who were not born premature, children who could not have ever received oxygen therapy, mechanical ventilation, bronchodilator, inhaled or systemic corticosteroids, and could not have a known congenital heart disease, neurologic disease, or neuromuscular disease. A primary respiratory cause was determined by the site PI, but was really asked for either a chest radiograph demonstrating focal unilateral or bilateral infiltrates, and radiographic evidence of air trapping, or lower respiratory signs on physical exam. This was a prospectively correct collecting cohort from 10 American PICUs. I'm just going to highlight a couple important definitions for the results section. First, the composite outcome of pulmonary dysfunction at discharge. This was determined either at 28 days or hospital discharge, whichever came first, and patients with either of the following, mechanical ventilation, supplemental oxygen support, ongoing bronchodilator use, or inhaled corticosteroid, or oral corticosteroid use were considered to have pulmonary dysfunction at discharge. Our composite outcome at both 6 and 12 months follow-up was persistent respiratory morbidity. This was defined as having either had a diagnosis of asthma post-discharge made by any practitioner, bronchodilator in the month prior to follow-up, inhaled corticosteroid use, representation to care, and that could include a respiratory complaint. It could include a primary care doctor visit for respiratory illness, emergency department visit, or readmission to the hospital for a respiratory illness. Lastly, we included a PEDS-QL asthma module score of greater than 5. Now, this score had not been validated for children less than 2, and no children met just for PEDS-QL asthma score. We initially enrolled 259 patients, and 4 patients had to be excluded for either missing data or determination that this was an index presentation of a chronic condition such as CF or SMA. That left us with 255 previously healthy children that required mechanical ventilation for acute respiratory failure. Of this, 87 patients met definition for pulmonary dysfunction at discharge. We had 158 patients that completed 6-month follow-up, and 42%, or 66 of them, had met criteria for persistent respiratory morbidity. Of these 66 patients, 41 of them, or 62%, had persistent respiratory morbidity also at 12 months. So, looking at the predictors of pulmonary dysfunction at discharge, we found that a diagnosis of pneumonia, the patient's highest or worst oxygenation index, and a positive bacterial respiratory culture when controlling for confounders were associated with this composite outcome. Interestingly, no other markers of disease severity or severity of lung injury, including ventilator settings, other metrics of oxygenation, were significantly associated with pulmonary dysfunction at discharge. Now, really, to the meat of what I hope the discussion will be, is the entity of persistent respiratory morbidity. Again, we found that worst oxygenation index was the only ventilatory severity of illness or oxygenation index associated with persistent respiratory morbidity, and this finding was only significant at 6 months. Looking at, again, specific viruses or bacterial cultures, we found that no individual virus was associated with persistent respiratory morbidity, but that having a positive respiratory bacterial culture at both 6 and 12 months was associated with both 6 and 12 months persistent respiratory morbidity. Lastly, having pulmonary dysfunction at discharge was associated with 6 months persistent respiratory morbidity, but that association had gone away by 12 months. In the children that did have persistent respiratory morbidity at 6 months, this was strongly associated with this continued finding at 12 months. So, when controlling for confounders, the predictors of persistent respiratory morbidity, we found these four things. At 6 months, it was the only clinical variable to be found, which is worst or highest oxygenation index, and then a positive respiratory culture. At 12 months, the association with oxygenation index had gone away completely, as well as any clinical variable, but in children that had had persistent respiratory morbidity, this was strongly predictive of ongoing persistent respiratory morbidity at 12 months. Now, before I discuss the implications, I'm going to talk about some of the limitations. Now, this finding of bacterial culture relation to both dysfunction at discharge and long-term respiratory morbidity has not been shown previously. We did, however, not standardize the collection of respiratory cultures. They may have been taken at presentation and are part of the patient's initial presentation for acute respiratory failure, but may have also been taken later in the patient's course, either at a time of worsening or if there was concern for ventilator-associated pneumonia. Additionally, we did not collect inflammatory markers to know if this bacterial respiratory culture represents a true bacterial pneumonia or is really more representative of colonization by bacteria. Secondly, any study that involves parental recall, there's always a chance for recall bias, especially because we were asking in the last month for the bronchodilator use and the steroid use and readmission. This was both to try to target that the children were still having respiratory morbidity, but again, makes it difficult for some parents, I mean for everyone, to really target an exact date in hectic lives. And lastly, we limited our study population to children under two. So, all of these findings and a lot of the discussion that we'll have in the remainder of the time, we really should think about what is the generalizability to older children. So, that leads me to the next polling question before I sort of talk about our conclusions and clinical aspects. Which of the following do you consider to be the most impactful marker of pulmonary morbidity? Readmission for a respiratory illness, need for daily respiratory medications that could include inhaled corticosteroid, bronchodilator, any type of medication, at least biweekly use of bronchodilator therapy, or likely activity limitation as reported by the patient or parent? I think most people think that the subjective reporting of activity limitation is most important, with others saying readmission. I think this is one of the things that makes some of this research challenging, is that we really need to specify a lot of these outcomes to what patients care about, not just what physicians care about. So what are our conclusions? Well, persistent respiratory morbidity is top and after acute respiratory failure, with 42% and 44% at 6 and 12 months respectively. That's nearly half of patients that were previously healthy are still reporting some type of respiratory morbidity out to a year after pediatric acute respiratory failure. Additionally, this finding of bacterial culture association with dysfunctional discharge as well as persistent respiratory morbidity needs further study. Is it potential that bacterial infection or colonization actually changes the early alveolarization process or takes longer for the lungs to heal than simple viral infections or acute respiratory failure for other reasons? I think that is unknown and really warrants probably some translational research to answer that. How do we put these findings into context though? Well, I think knowing that nearly half of these patients may have persistent respiratory morbidity, we really need to work in teams and work all together. So first, I think it's really hard to know who, which parents to counsel about the chance that they may have, that their child may have ongoing respiratory limitations. So we probably should try to counsel everyone and say that there is a chance that this occurs and really we need to do more anticipatory guidance of the things to look out for and what they should have ongoing discussions with their pediatrician about. Secondly, I think that the involvement of teams early on, including rehabilitation specialists, PT, OT, speech language pathologists, all is important both for their inpatient care and really their outpatient care to identify the children that may benefit from this. Lastly, my wife is a primary care pediatrician and she always makes fun of me saying that when we send children after their ICU stay, they have a 15-page discharge summary that tells all about the hospital course, but doesn't say what she should actually be looking for at her follow-up visitor in the coming months. And I think we need to be better about talking to our general pediatricians and pulmonologists and other members of the team of, hey, here's what happened and maybe we should be looking out for if the child's having activity limitation, if they're having wheezing that maybe would benefit from albuterol. I mean, really start to bring all of this together to a team approach. Thank you very much for this. I look forward to any questions in the discussion you have. I'll turn it back over to Tony now. Well, thank you very much for some great presentations, Katie and Garrett. I very much appreciate it. And this is just a reminder for everyone who's listening right now, if you have any questions for the panelists, please at any time enter those questions into the question box on the control panel, and I will help moderate some questions. I guess my first one goes for really both Katie and Garrett. It seems like both in adults and children, there's a lot of morbidity and persistent respiratory problems in these patients. I'm assuming that there's probably a lot of financial toxicities in the parents and kids as well, especially taking time off work and insurance problems as well. What do you think would be a Tony, that's an excellent question. I certainly, I think that we do need to have a two-pronged approach. I really appreciate Dr. Kimes' suggestion, but I think that there's a lot of potential for us to be able to address some of these issues. And I think that we need to we do need to have a two-pronged approach. I really appreciate Dr. Kimes' suggestion of making sure that that information transfer from what ICU clinicians know about patients and sort of what they know from their expertise in critical illness, and particularly about survivorship, making sure that that information does get transferred to those providers who are going to continue taking care of these patients after they are discharged from the hospital, and giving those clinicians, as well as patients and families, some anticipatory guidance about disability, about potential financial toxicity, and then also letting them know, hey, there are resources. We have PT, we have mental health services, we have things that if you need these, you know, you can be connected to them. One of the things I know can happen from Dr. Kimes' work and from others is that patients who actually don't have a problem at discharge can have it later on. So it's not just they didn't have it when they left the hospital, so it's not going to be an issue. And the other piece of that, of course, is the social policy piece. And I think that in the time of COVID, we have an opportunity to really examine the systems that we have and potentially see where they are not meeting needs well, and do some advocacy work saying, what would it look like to make sure that critical illness survivors, whether they're kids or adults, and their families have the social safety net that they need, whether that's increasing access to disability, increasing access to caregiver respite and other kinds of support programs. I definitely think that we need the in-the-hospital or sort of in-the-healthcare system approach, but also the broader social policy approach. Yeah, I agree completely. I think, you know, as a pediatrician, I see so much of how this affects families from the standpoint of missed work to spend time with their child, to the emotional stress that comes when people cannot miss work and have to go to work and their child's alone in the hospital. And I think both of those burdens exist, but many of the times, the financial toxicity and the financial implications are a direct counterpoint to a lot of the social considerations for children. And I think that, you know, just like Katie was saying, thinking about how we can address this in the short term, but also really setting parents, and for the adults, the individual that has the illness up for success with coordinated follow-up, trying to figure out who is best to see them if they need the rehab service or if they need other types of services. And I think that outside of just research, probably talking to the individual and saying, what are your goals? How are we going to get you back to work or how are we going to get you, you know, back to caring for your family, those things, and tailoring some of the approach during the healing phase to the patient's goals, during the healing phase to the patient's goals will probably lead to better long-term success. Well, thank you very much for those answers. The next question was specifically, is there any difference in public versus private insurance in regards to being protective for some of these financial toxicities besides the obvious reasons? Yeah, I mean, I think I definitely want to sort of qualify that finding that public health insurance programs were described by participants as protective because, you know, what this probably means is that individuals who are on Medicaid may simply already be operating in a resource-scarce environment and have developed some coping skills for operating in that environment or may have different expectations of what their health care is sort of required to provide for them. So I don't want to suggest that public health insurance, you know, fixes every single problem of financial toxicity, especially knowing that at least in the U.S., a lot of times access to public health insurance is dependent on some level of need already. But I do think that public health insurance potentially has created some pathways that improve recovery. In related work actually being done through the VA, there seems to be some evidence that that system is just better coordinated. So not only are patients not experiencing some of the financial burdens, they also potentially have greater opportunity to be linked to services and to have different recovery coordinated both in terms of their follow-up visits so that they're not trying to mix visits at different hospitals or with different providers, make sure that that care is happening for them. So I think that there are opportunities for us to look at why public health insurance programs are helpful and maybe try to implement some of those things as much as possible in a private health care system. But certainly I think the U.S. context is probably unique in creating financial toxicity related to medical bills and insurance coverage issues. Great. Well, thank you very much. The next question is, should there be any routine monitoring for disabilities of survivors, including financial toxicities? And if so, what should they be and when should they be monitored? Thanks. I think that's a great, important question. As a critical care doc, I'm scared to say like, oh, we really need to do all of this outpatient follow-up and then be asked to do that since I really like working in the hospital. But I do think that routine monitoring of these children is important. Now, at what level is that through actually improving the quality of care through actually improving our communication with the patient's already existing primary care doctor who knows them and counseling, here are the things to look at. I think you should have a follow-up visit in the week after they leave the hospital and then again at the one month, three month, six month mark. I think that for many patients that would be sufficient. And if the primary care physician found things that they were concerned about, found things that really needed a specialist care, such as a pulmonologist, they would be able to refer into the specialist of need and have a tight network. Now, for certain children, and one of the reasons that we're hoping to find real predictors from the time at hospital discharge of who would have persistent respiratory morbidities, trying to find the children most at risk that may benefit from really specialized follow-up care at specific intervals to see if we can improve their long-term outcomes. And I think the question of who those patients are and when is still up for debate. But I think, you know, a early post-discharge visit with either the primary care doctor or a pulmonologist and then ongoing at sort of every couple month intervals through the first year would probably help screen for a lot of these findings and potentially improve children's long-term outcomes. And I think that would translate well to adults as well, to be honest. Yeah, I would completely agree with Garrett that having some multiple points of follow-up and monitoring makes sense for adult patients. And I think that'll probably map on as well to financial toxicity. You know, there's some work that's sort of shown that there's a really haphazard connection with sort of how patients end up qualifying for charity care or working at the hospital to reduce bills, similar sort of inconsistent take-up of social welfare programs, which means we have a system that really relies on people knowing what resources are available for them and advocating for themselves. And I don't think that that really makes sense when you're dealing with people who are post-critical illness and probably dealing with significant physical disability, probably some cognitive issues, and also just the profound fatigue that comes from surviving a critical illness. So yeah, I think that if we have opportunities to just screen and link people to resources, that can be done either by the primary care physician or some other person who has long-term follow-up with the patient, but we definitely need to be proactive because patients and families are not necessarily in a position to anticipate everything that could go wrong and then what might be available for them to deal with that. Well, thank you. And it looks like your co-author, Dr. Ishawa, said that SQCM has some state-of-the-art document for pragmatic recommendations on post-discharge counseling and follow-up, and that should be coming out in critical care medicine soon. So that's very important news, and it kind of flows into this talk. It sounds like there's a lot that we need to do and look at with our patients, especially after they leave our ICU after ARDS, but I would like to thank you both, Katie and Garrett, and the audience for attending. Again, for anyone and everyone who joined us today, you will receive a follow-up email that will include an evaluation. Please take the five minutes to complete the evaluation. Your feedback is greatly appreciated. And on a final note, our next Journal Club will be on September 24th, and this concludes today's presentation, and I'd like to thank our presenters yet again. Great job. Thanks so much, Tony, and thanks for the opportunity to talk about this work. Yeah, it was a pleasure, and I learned a lot from Katie's work. Thanks so much, everyone. Thanks.

Journal Club webcast

Critical Care Medicine

financial toxicity

acute respiratory distress syndrome

patients

financial burdens

respiratory morbidity

previously healthy children

mechanical ventilation