Hello, everyone. Thanks for joining us today for our webinar, Barriers and Considerations in Access to Cirrhosis Care. I'm Shilpa Jun. I'm a transplant hepatologist at Cleveland Clinic. And Jeff Kahn, thank you for helping organize this wonderful webinar for us today. This is hosted by the ASLD Inclusion and Diversity Committee. And I'm going to turn it over to our moderators to introduce both of our speakers for today. Thank you, Shilpa and Jeff, for inviting us all to this webinar. So my name is Nicole Rich. I'm an assistant professor of medicine at University of Texas Southwestern in Dallas, Texas. My area of interest in research and clinically is in liver cancer and particularly disparities in liver cancer. And today we have a really exciting webinar on barriers and considerations and access to cirrhosis care. So our first speaker will be introduced by Dr. Kalthur Mohamed, and I will let her take it away from there. Hello, everyone. My name is Kalthur Mohamed, and I'm a second year gastroenterology and hepatology fellow at the University of Minnesota. Today, I have the pleasure to introduce Dr. Zoe, a transplant hepatologist and assistant professor in the Division of Gastrointestinal and Liver Diseases at USC's Keck School of Medicine. She received her medical degree from Feinberg School of Medicine at Northwestern University, a Fulbright Scholar, and completed a T32 gastroenterology and transplant hepatology fellowship at UCSF, where she also received a master's in clinical research. Her research program is funded by the National Institute on Minority Health and Health Disparities, where she focuses on socioeconomic disparities in liver disease and cancer, and the utilization of novel geospatial approaches to improving equity and outcomes for multi-ethnic safety net populations. Today, she'll be discussing safety net hospitals and healthcare affordability and cirrhosis care. And so without further ado, I'll turn it over to Dr. Zoe. Thank you so much, Dr. Mohamed. All right, let me pull up my slides. Okay. So it's lovely to be here today, and I really wanted to thank the Diversity and Inclusion Committee, Shilpa and Jeff for hosting this very valuable webinar on a very important topic. So today, I'll be discussing safety net hospitals and healthcare affordability and cirrhosis care. So I, as a transplant hepatologist, I have the absolute privilege and pleasure of working with two very, very distinct healthcare systems. So the first is Los Angeles General Medical Center, which is one of the largest county hospitals in the nation, provides care to a very indigent population here in Los Angeles. And the second is a tertiary care center with a transplant clinic and a transplant program, whereby we have all of the resources that can be provided for our transplant patients. So really seeing these two distinct systems really shapes both my practice as well as some of my research. So to start, I'm going to be defining what is the safety net. So the Institute of Medicine actually defined the safety net back in 2000 as those providers that organize and deliver a significant level of healthcare and other needed services to uninsured, Medicaid, and other vulnerable patients. So this very broad definition essentially is that the central tenant of safety net systems is they provide care, critical and essential services to anybody, any person, regardless of their ability to pay. And I encourage anyone who's interested in safety net systems to read this paper back in 2000, because it really outlined some of the challenges, the barriers, as well as the potential viability of safety net programs in the United States. And a lot of that, which they highlighted back in 2000, still resonates 23 years later. So because of this very broad definition of safety net, actually there really is no consensus on how we define a safety net hospital facility or system. They all provide essential services to vulnerable populations, but what that looks like can be very, very different on the ground. So some of the definitions that have been put forth include public ownership. It can include the amount of uncompensated or charity care that a facility provides. You can define it by the caseload. So the caseload of their patients that are Medicaid and uninsured, which is an inpatient caseload, or often used in research, is something called the Medicare Disproportionate Share Hospital Index, the DSH index. That's based on CMS cost reports and includes the number of Medicare and Medicaid patient days over the total number of patient hospital days. Depending on which definition you use, so uncompensated charity care tends to identify smaller, more rural safety net hospitals. The other two, the caseload and the index, tend to identify larger urban teaching facilities. And I'd say in general, research really tends to favor these larger urban teaching facilities. And much of what I talk about here is more, it comes from these teaching facilities. And one study looked at concordance among these three different definitions, and really there was low concordance. So less than 13% of safety net hospitals could be identified by two or more definitions. So certainly depending on what definition you use, you might be talking about a different type of safety net, but generally it is a very heterogeneous hospital and healthcare systems. So safety net care is actually quite costly, and it definitely comes with lower margins. So this data comes from America's Essential Hospitals, which is an organization that supports about 300 safety net hospitals across the nation. And what they found was, in terms on the left, in terms of uncompensated care per hospital, safety net or essential hospitals here had seven times more uncompensated care than the average U.S. hospital. So that cost is actually quite large. And if you look at the payer mix on the right, this is inpatient payer mix, the vast majority of payers are governmental insurances. So only about 21% came from commercial insurance. And then because of this, really these hospitals tend to operate much more efficiently, and the average margin is about 60% less than other U.S. hospitals. So essential hospital members had 3.2% margin compared to 7.7% across other U.S. non-safety net hospitals. And who are safety net patients? Well, it is very, very diverse. It incorporates many racial and ethnic minorities, so minorities are more represented in safety net hospitals compared to non-safety net hospitals. Many have lower education and are living at or below the federal poverty level. Many are immigrants, and particularly including the undocumented, who primarily are only able to seek care at safety net facilities. So Medicaid insured, of course, and that includes about 56 million U.S. citizens, U.S. persons. And that was an estimate in 2019. And then it also, the large population of uninsured estimated at 26 million. It spans both urban and rural communities, so definitely no geographic disposition to all cross geographies. And then, of course, our vulnerable unhoused and incarcerated persons. So the next section, I'm going to posit the reasons why safety net systems are incredibly important to our patients with cirrhosis. So I wanted to make the link first between economic prosperity and liver-related mortality. So on the left is data from CDC Wonder, and it speaks to cirrhosis-related mortality, but particularly due to alcohol, although some of these trends are very similar among the general cirrhosis population. So you see here, liver-related mortality due to alcohol has been rising since 1999, but really there was an inflection point seen in 2009 where the rates of rise became much, much higher. And this was across different geographic areas, though the highest rates of increase were seen in rural populations. So one can maybe theorize that that inflection point in 2009 had to do with our 2007-2008 financial crisis. And ecologic data on the right potentially supports this idea in that when you look at counties and the degree of economic prosperity that they've had in change over time, so prosperity being split into tertiles, the first tertile being the counties with the smallest or the least increase in economic prosperity over time, that group actually had the biggest increase in liver-related mortality. So what I think this sort of suggests is that, you know, deaths of despair, economic prosperity is somehow related, of course, to our risk factors for liver disease, alcohol, obesity, injection drug use, and that ultimately translates potentially into increased liver-related mortality. And further ecologic data sort of supports how poverty contributes to geographic differences in mortality. So on the left, again, CDC Wonder data over a 20-year time period, and the map demonstrates the differences, the geographic variation in liver-related mortality across the United States. And when these researchers looked at the county level factors that were associated with liver disease mortality, the things that came out as most important or were significant included racial ethnic composition, the percent of adults living below the poverty level, the percent uninsured, miles to the closest treatment center, percent with diabetes, and percent with heavy alcohol use. And these six county level factors explain about 60% of the variability in mortality among these different counties. So again, providing a link between poverty and liver disease mortality. And we also definitely see local effects of poverty. So this is some of the work I've done looking at late-stage liver cancer burden in Los Angeles, and these are essentially hot spots of late-stage cancer. And these hot spots you'll see on the left are really concentrated in our lowest and lower middle SES communities, whereas areas of high SES really were entirely outside of these hot spots. And on the right, looking at the distribution of census tract SES across hotspot and non-hotspot areas, you see a clear gradient that favors the lowest SES areas within hotspots, whereas the distribution is much more even outside of hotspots. Such that in our multivariable models, living in the lowest SES neighborhood compared to the highest meant you were 33-fold more likely to actually live in a late-stage liver cancer hotspot. And what this ultimately means is that cirrhosis hospitalizations have increased, and that has increased the burden on our safety net systems. So on the left is data from the National Health and Nutrient Examination Surveys database, and it just compares the poverty and income levels among patients that were identified to have cirrhosis in the database amongst all others who did not have cirrhosis. So in the non-cirrhotic population, only about 30% had an income less than 1K or under the federal poverty level, whereas for cirrhotics, that actually increased to nearly 50%, so a significant difference. And on the right is data from the National Inpatient Sample. So in general, cirrhosis admissions and hospitalizations have increased across the population in all hospitals, and that increase has been highest among the lowest income quartile at about 5% year after year, compared to the highest income quartile, which is about 3% year after year. And this graph just demonstrates the admissions within U.S. public hospitals, which is one potential definition of a safety net. And you'll see here that the highest frequency and greatest gains really also still come from the lowest income quartile. So again, increasing burden of cirrhosis on our safety net systems. So what barriers or disparities do safety net patients with cirrhosis actually experience? There's disparities across many, many different disease conditions. Importantly, there are disparities in inpatient care for cirrhosis. So the inpatient burden we just demonstrated is very high for cirrhosis in safety net systems. On the left was a study that looked at the amount of the burden of safety net patients within a hospital. This was defined as the percent of hospitalizations per hospital with Medicaid or uninsured payer status. So medium and high burden safety net hospitals actually had slightly higher inpatient mortality. So 5% higher for medium, and 6% higher for high safety net burden hospitals. Other factors that predicted inpatient mortality included lower likelihood of inpatient mortality with female sex, higher likelihood for Blacks, lower for Hispanics, and then higher for those who are Medicaid insured. And then interestingly, insured status but not race and ethnicity were associated with hospitalization outcomes for cirrhosis. And this is in the NACSEL database. So 13 tertiary care centers in North America prospectively collected data on patients with cirrhosis who were hospitalized. So for 2,640 patients, 30% of which were Medicare, about 10% Medicaid, 7% uninsured, insurance status was actually a significant predictor of ICU transfers, length of stay, development of acute or chronic liver failure, 90-day transplant rates, and inpatient deaths. There are also more barriers in safety net systems to screening for liver cancer. So this telephone survey was done in over 1,000 patients with cirrhosis at three different healthcare settings. So Parkland, the safety net, UT Southwestern, and the VA. And having one or more barriers identified was associated with a 38% lower likelihood of getting vitamin screening. And what you'll see here is that the highest proportion of reporting barriers was in the safety net setting for nearly all of the barriers described. And on the right for the composite barrier, the safety net clearly wins out in the percent reported. So 60% reported at least one barrier. And the most common barriers reported were cost, problems with scheduling, as well as transportation. Here at our safety net hospital, we looked at patients with chronic hepatitis B. So 1,000 safety net patients with chronic HPV. An interesting thing in Los Angeles is that we have a large Hispanic population. So not a traditional risk factor for HPV. However, we do see in our population that 30% of our patients are actually Hispanic. And so compared to other ethnicities, specifically Asians, our safety net patients actually had a higher rate of diagnosis of HPV in inpatient or emergency department settings. So not very ideal. They had for outpatient followup, they had less testing for HPV DNA and antigen status and lower referral to hepatology clinic and treatment. And ultimately what that sort of means is we, I think that there was significant delays in diagnosis in this population, whereby we saw more liver related complications than diagnosis. So 25% with cirrhosis defined by ICD-9 and non-invasive testing compared to only 15% of Asians. And then further safety net communities are really disadvantaged in liver transplant. So looking at an area-based social determinant of health index, you'll see here that Quintile 1, so those are the neighborhoods with the worst social determinants of health, only 14% of the wait lists were comprised of those patients compared to two-fold higher. So 30% lived in Quintile 5 or neighborhoods with better social determinants of health. So clearly an issue of access to liver transplant in these communities. And then on the right, when we looked at wait list mortality in the same cohort of listed patients, those who lived in Quintile 1, so the lower, were social determinants of health, had a 19% higher likelihood of wait list mortality compared to those who lived in Quintile 5. But really I think the question comes back to access. So what happens actually at the point of referral? In safety net hospitals, there remain suboptimal rates of liver transplant referral. So this study we did across three different safety net sites in the West Coast, so California and Washington State. We took all outpatients with cirrhosis and milk sodium over 15. So presumably a group that should be referred and looked at what happened to them over time. So 521 total patients of those, about a third were actually referred. Most of those were evaluated and then about one in 10 were listed and 28 were ultimately transplanted. And the reasons for non-referral were probably those that you would imagine. So a lot of issues related to active alcohol use or limited sobriety, and this was a time period when early transplant for alcohol wasn't quite as prevalent as it is now. But many also experienced a lot of issues with insurance and then other social determinants of health, undocumented housing issues, substance use, lack of social support, et cetera. And some of the factors influencing liver transplant outcomes we looked at. So on the left is that same cohort of patients who potentially could have been referred and looking at those that referred and not. Some of the factors that were important include men were less likely to be referred than women. Blacks were much less likely to be referred compared to Hispanics. And we took Hispanics because that was the largest group in our cohort. Undocumented, much less likely to be referred, uninsured, of course, and then those with hard alcohol use. And on the right, we actually looked at specific factors in those that were referred and evaluated in how likely they were to be listed. And we did focus on psychosocial factors coming from the social work evaluation. You'll see here some of these factors are very much related to social determinants of health. So living in a rental compared to those who had a house, those with limited social support were less likely to be listed, undocumented again, and then those that reported a transportation barrier. And importantly, these factors were independently predictive, whereas clinical factors such as malt and etiology were not. So taking that one step further, we decided to ask safety net providers what their perceptions were on transfer referrals to figure out what might be the reasons why these patients are not referred as much as perhaps they should. And in this national survey, we had 50 respondents that self-identified as safety net gastroenterology and pathology providers. They came from all parts of the country, included both academic and community practitioners. And the interesting thing is, so I highlighted here the patient-related barriers because most of the barriers that the providers identified really were at the patient level, so much less at the system as well as the provider level. And some of those patient-related barriers were the lack of insurance, insurance not covering transplant, issues with social support, financial resources, unstable housing, transportation. Those were some of the top reasons that providers felt that their patients could not achieve either referral or transplant. And in these safety net systems, these providers, only 12% reported having access to patient navigators, but they actually ranked patient navigation as the most likely pathway to improving referral practices, followed by an expedited or expanded pathway for insurance coverage for liver transplant. Now, what policies or interventions might mitigate some of our disparities in safety net cirrhosis care? So many of these interventions span all the way from national policies down to the individual level. So I think Medicaid expansion obviously is very important. So Medicaid expansion under the Affordable Care Act allowed states to adopt in 2014 expansion of their Medicaid services to adults who were up to 133% of the federal poverty line. So 31 states decided to adopt Medicaid expansion. And what studies have shown is after the adoption, we did see lower cirrhosis-related hospitalizations as well as costs in states that expanded. We did see also more early detection of HCC and lower mortality and a 10% increase in the proportion of liver transplant candidates with Medicaid. So some benefits for sure. And then on the right is a study that looked at liver-related mortality. So we have non-expanders on the left, expanders on the right, and comparing both pre-expansion liver-related mortality compared to post-expansion. You'll see we had a decrease in the age-adjusted liver-related mortality rate in the post-expansion. Oh, sorry. In post-expansion, we saw increase, but less, so sorry, for those that expanded compared to those that didn't. So this equated to an 8.3 fewer deaths from liver disease per a million adult residents per year in the expansion states post-expansion. How specifically did Medicaid expansion impact safety net systems? So Medicaid expansion did lead to improvements in safety net hospital finances. They saw larger Medicaid revenues, reduced uncompensated care costs, and improved operating margins. Interestingly, there really was no change in the percent uninsured or Medicaid insured that were hospitalized in safety net hospitals, suggesting potentially that patients who used to go to safety net hospitals really did like their care there and continue to seek care in those hospitals. And interestingly, there was really no change in the quality of care. If we looked at 811 safety net hospitals on the right, quality measures such as patient experience, infection rates, readmission rates, mortality rates, and you'll see on the right that really for all of these quality measures, they crossed zero in terms of differential change before and after Medicaid expansion occurred. And now in terms of state-based policies, really there is an opportunity to effect change through change in Medicaid policies. So here in California, we've had sort of two major changes that have benefited our patients with liver disease. So on the left is the Medi-Cal policy for alcohol-associated liver disease. So in the past, there were states that had a restrictive policy related to alcohol, specifically the six-month period of abstinence in non-restrictive states. California was one of those restrictive states. And you'll see over time, depending on whether you were a restrictive state or a non-restrictive state, the number of transplants from Medicaid for alcohol significantly differed between those two groups. And this data was brought by one of my colleagues here at USC to the Medi-Cal group here in California. And using data around how six months period of absence is really not evidence-based in other information, they were able to convince the Medi-Cal group to actually, in February, 2002, 22, expand access to liver transplant in selected patients with ALD without that mandated six-month period of absence and use much less strict eligibility criteria, which is much more in line with every other type of insurance, especially private insurers, and promote equity for these ALD patients. And then on the right, something that we struggle a lot with and with our inpatient, very sick, high male patients is that many of these patients are undocumented. And one of the first barriers and steps with them getting access to transplant is actually getting unrestricted Medi-Cal insurance. So previously, this was quite a lengthy process. It required a long time, during which period these patients were very vulnerable to dying. So fortunately, in May of 2022, Medi-Cal has now adopted automatic eligibility for full-scope Medicaid coverage for all qualifying adults 50 or older, regardless of their immigration status. And as you see on the right, essentially, California already accounts for a large majority of those undocumented immigrants that are accessing transplant, and so certainly help. And this is hopefully a practice that can expand onto other states as well. So in terms of individual level interventions, what I wanted to highlight was an intervention in HCC surveillance, because it demonstrates that there's variation in intervention impact, depending on what system you're doing that intervention in. So this initial randomized control trial was a mailed outreach plus or minus patient navigation on a liver cancer screen in a large single safety net healthcare system, a large one. So they demonstrated within this health safety net system that there was an increase in initial ultrasound screening for HCC, as well as an increase in enhanced screening over an 18-month period. So on the right, you'll see that 45% with outreach alone achieved one-time HCC screening, compared to 47.2% when you added patient navigation. So maybe a very limited effect of the addition of patient navigation. But both of those were significantly better than usual care at 24.3%. Now, the next step is they then expanded the study to different healthcare systems. So they also studied the same intervention in a VA system, as well as a tertiary care system. And among these three systems, a significant effect of this intervention was only seen actually in the safety net in the VA system. So probably systems in which this type of intervention, well, this type of intervention is helpful in safety net VAs, but maybe not necessary in tertiary systems. Now, in addition to addressing specific outcomes, addressing social determinants of health, I think is very, very important in these patients. So here at USC, we're piloting a trial of a need-based transportation assistance program in liver transplant candidates. So the first is called TAP liver transplant. The first phase of this intervention was to first assess how many patients actually had transportation barriers. So we do serve a high number of safety net patients in our transplant center. And among our patients, one in four actually reported at least one barrier. And the patients that did report barriers was quite striking. So 82% were foreign born, 60% were non-US citizens, 54% were Medicaid insured. They also had more negative indicators of social determinants of health. So unsteady living, 28%, 55% had food insecurity. And those with barriers had slightly longer evaluation times, 151 days compared to those without barriers at 134. So our second phase of this is actually intervening. So we selected patients who either reported a transportation barrier or had Medicaid insurance and invited them to participate in intervention where any of their transportation to medical visits would be supported by a Lyft ride share during their evaluation period. So we're still in the middle of this. We fully recruited our patients. We're just following up on the outcomes and there's still some that are continuing to take rides. But hopefully I'll be able to share this data with you guys in the later date. And the last thing I wanted to touch on telemedicine because I think for safety net systems, this makes a lot of sense. So technology and the ability to reduce distance through telemedicine or other virtual programs can be potentially very helpful in reducing disparities and potentially very low cost, which I think is important. So one of the ways telemedicine can be used is through something called the Echo Hub where you have specialists that provide didactics and support for spokes to treat some particular disease. So in instance here, we have this program for the treatment of hep C and essentially our tertiary hospital provides support to community health workers, FQHCs and other practitioners who want to treat their own, really primary care physicians who want to treat hep C and we provide them with the didactics and the know-how to do so. And this has been shown to be an effective tool for hep C treatment, incarcerated and remote areas, but also I think in the urban communities here as well. These type of telemedicine virtual programs have been shown to expedite evaluation of patients with HCC. So virtual tumor boards for rural areas, I think is really important. It's been shown to prevent and reduce re-hospitalization in high-risk serotics and really improves patient satisfaction. But one thing to note is that while this is a great idea, technology access doesn't necessarily equal access to liver care. So you'll see, it's almost complete opposites in the parts of the country where you had the lowest access to internet. You also had the, unfortunately, the lowest access to GI and transplant centers. So you'll see all the areas of white, meaning no access to local GI or transplant centers within a hundred miles are also the areas where people really didn't have access to technology. So in those areas, 35.5% on average, and I have a computer, 43.1% without internet. So before we can really advance, you know, the use of telemedicine and telehealth for mitigating disparities, we have to also work on technology access. So some of my parting thoughts. So in terms of definitions, I think we do need a more standardized definition of safety net systems. And the idea that's out there is using more of a sliding scale or a continuous measure of disadvantage so that you can better match funding to resource constraints, rather than just separating those into like a high or low, it's more of a continuous method of description. And safety net systems, as I've shown, are increasingly important as the burden of cirrhosis rises in the US, and that rise has been faster in rural as well as low-income populations. Safety net patients with cirrhosis experience disparities in care and face lots of barriers related to social determinants of health. So an action item might be doing more social needs assessments in these patients and collection of multilevel data. That would be really the informative in improving the care of those patients. But I think I'm leaving you here with that there are solutions and they exist at the policy, the system, and each level. More implementation studies where we take these solutions that have worked and really apply them across safety net systems are needed. And I think more studies that demonstrate that these interventions might be cost-effective or cost savings potentially, would certainly assist in buying of the administration of these hospitals where resources can be very constrained. All right, so thank you. That's all for me today. If you want more information, we are publishing a review on thinking systems and chronic liver disease in a special issue of healthcare journal coming out. So please check that out if you guys are interested. All right, thank you. Thank you, Callie, for that excellent talk of really important topic on safety net hospitals. We'll dig right into our next speaker who I'll introduce here in a moment, but please, if you have questions for either speaker, please put those in the chat and we will have a short Q&A at the end. So our next speaker, we are really privileged to have Dr. Archita Desai. She's an assistant professor of medicine at Indiana University School of Medicine. She completed medical school at UCSF and the rest of her postgraduate training at the University of Chicago, including fellowships in GI and transplant hepatology. Her research interest is on the clinical care of patients with liver disease. And she's gonna be giving us a really important talk today on cirrhosis care at home. So take it away, Dr. Desai. Great, thank you. I'm really pleased to be here and I appreciate the invitation from the ASLD team and all of the moderators. As Dr. Rich said, I am an assistant professor at IU and I'm deeply interested in how we can improve the healthcare journey that our patients with end-stage liver disease take. And I think cirrhosis care at home is really a topic near and dear to my heart. So we'll just dive right in. So what I hope to cover, if I can get, there we go, is really to educate all of us on what is health literacy and in addition to health literacy, how does that translate to knowledge and these knowledge-related barriers to cirrhosis care at home? What do we know about them? And then finally talk about a way to assess these knowledge-related barriers so that we can then have targeted interventions for our patients. So I really always like to talk about why. Why are we talking about this? We all know that cirrhosis leads to very significant healthcare utilization after diagnosis. Really, it's a very difficult position for patients to be in. We're asking them to do many activities of chronic disease management. However, it's in the setting of an end-stage disease. I use this depiction because I feel this often is how patients are feeling as they're being told, whether they're in the hospital or in our outpatients clinic about their cirrhosis diagnosis. They're feeling like they're at the edge of a cliff and really looking at unknown, uncharted waters. And we're asking our patients to follow complicated medication regimens that are often changing, very strict dietary restrictions and really engaging in a lot of disease monitoring activities at home. And really what we're left with is that healthcare utilization, while it's prominent, is difficult to predict and avoid. So this is a study that I won't get into, but it looked at a lot of data and found that through the data that's in our EMR, we're not really able to predict readmissions in cirrhosis, which happen about one out of three times. So for every three patients that go home within 30 days, at least one of them will be back, which is an astounding number, more than heart failure, more than COPD. So really other end stage diseases that patients suffer from. And so, as I said, much of my research is motivated by asking why is this the case? And one approach and the way I've sort of looked at it for the past few years is, I think part of it is we're not collecting data that is relevant to this outcome and to our patients. And there's a lot of literature out there about big data and are we really just looking at the tip of the iceberg? And I think with cirrhosis, that's true. There's many different types of data and drivers of healthcare use in cirrhosis. And of course, today we'll focus on what's patient generated health data, which we don't really collect. And just to show you why this is meaningful in cirrhosis, there are, I think, many unmeasured patient reported outcomes. Once we start asking patients, we are able to better predict readmissions unlike the prior study that I showed you. So this is a study that I did with my colleague, Eric Orman. And if you see, once you start looking at socioeconomic status, functional status, and quality of life, we improve the prediction of 30-day readmissions. So let's get back to health literacy and knowledge. What is the role of these in chronic disease? And before we get into that, I'd just like to show you some definitions. So we're all talking about the same thing. And these definitions have evolved over the years. And initially there was a focus on health literacy and actual reading literacy, most often focusing on written word. However, as the definitions have evolved, we're really understanding that health literacy specifically is linked to literacy as we traditionally think about it, but also related to a patient's motivation and their competence to really take that information, not just understand it, but then weigh it in terms of risk benefits into their own lifestyle, both culturally and in their environmental context, and then apply that information to make these decisions that we're asking them to in everyday life. And how does health literacy impact health outcomes? This is a really complicated conceptual model, but I think important to have in our minds. While there are many determinants of health literacy, health literacy itself is a very important determinant of how patients access and utilize healthcare. It's a very important determinant of how our patients communicate with us as providers. And it's a very important determinant for self-care. And these domains then lead to the health outcomes that we're hoping to achieve or avoid. So if I take a big step back, what is the data for liver-related knowledge at the population level? Well, this is a really great study. It was done in Sweden. This was a population-level study that just went out as an electronic health survey. They had about 500 respondents from the general population. And it turns out that many did know what the liver does. It's involved in digestion. It filters chemicals. Some of them, about half, knew that its important role in storing energy and regulating hormones and blood sugars. However, once we started to get more specific in terms of function, about one out of three thought that the liver made urine and not the kidneys. One out of four did not know that the liver existed in the abdominal cavity. And about one out of five, so 20% thought you could survive without a liver. So just even at the population level, there are gaps in liver-related knowledge. This became even more obvious when these same respondents were asked about liver disease-related symptoms. So very, very few knew that liver disease causes swelling and cognitive impairment, which are the most common manifestations of liver disease. So pretty surprising results. If you then look at health literacy in people with cirrhosis, there's a really neat study that compared sort of just health literacy in patients with GI cancer, IBD, and then cirrhosis. And they use what's called the health literacy questionnaire which has nine domains. So it goes through 44 questions about general health literacy. And in all of the subdomains, our cirrhosis patients did not do well compared to GI cancer and IBD. And I'll just kind of quickly run through these just so you have a flavor of what the scales are. So from scales that look at how patients feel in terms of being supported or understood by the healthcare provider, scales that talk about having enough information to manage their health actively. All of these, you know, these figures are hard to look at but significantly lower knowledge in patients with cirrhosis compared to GI malignancies and IBD. And these are some of the other scales that are included in the health literacy questionnaire. This includes how to appraise health information and ability to actively engage our healthcare providers. And then finally, the last three domains include navigating the healthcare system and being able to find information and then understand what to do with it. So in all of these domains, our cirrhosis patients did not fare well compared to other chronic diseases and other end-stage diseases. What's the data out there linking cirrhosis knowledge and health outcomes? There's a few studies, but I'd like to highlight this one. This was done in Australia, which has a very, it has a national healthcare system. And so they were actually able to look at all-cause readmissions, cirrhosis-related readmissions, admissions through the emergency department, meaning sort of unexpected admissions, as well as cost of care. And what they found is that the lower healthcare use went in hand with good knowledge about liver disease. They also did look at determinants of cirrhosis-related knowledge, and they found that patients who are older, of higher socioeconomic status, higher educational status, all of these factors were associated with higher baseline cirrhosis knowledge. But once they adjusted for all of that, knowledge was still independently associated with these healthcare utilization markers. What was interesting to me is that when they looked at the length of illness or the severity of illness, these were not associated with cirrhosis-related knowledge. So somehow, despite being in the healthcare system for longer, presumably seeing liver specialists, or being sicker from their cirrhosis did not improve their knowledge. And in fact, probably if they had done some analyses, it would be associated with that higher healthcare use. We also know that knowledge can be really important during the care transition from inpatient to outpatient care. So this was a nice qualitative study done by Dr. Ria Ferri. She focused on asking, what do patients and their caregivers need when transitioning from inpatient to outpatient care? So really in that time period when readmissions are common, is health-related knowledge a theme that shows up? And what she was able to show with her research group is that there are some domains of themes, or I should say themes, that patients reported in their interviews, and information was one of the key themes. And she was able to link that to the shock of the initial illness and delay in illness understanding and how that impacted patients. So what I mean to say is patients often talked about how that initial diagnosis was traumatic and left patients with a lot of questions about their prognosis and not being able to find that information through their provider, the healthcare system, or really online. And then that delay in understanding impacted how patients engaged with their healthcare system. And some proposed solutions from the patients themselves were things really targeted at information. They wanted to know if I go home, what should I look for? Give me a checklist of signs and symptoms that I should be looking for. They wanted to know what online resources I should use. Patients repeatedly comment on the fact that they were given a lot of resources but not told this one is better than the other, or this is more important to read than the other in your particular situation. Patients also noted that their caregivers who were partners in their care and recovery needed education and support. And so these are gaps in our current care model for cirrhosis care. So what I sought to do is really think about how poor health knowledge in cirrhosis impacts that health care utilization. And as I reviewed the literature, as we have this afternoon, what I noted is that we really needed a validated instrument. So I'll spend a little bit of time talking about the work I've done to create that instrument with the hopes that you'll use it in your care of cirrhosis patients. So we had a large study sample. This study was started in my time at Arizona where we enrolled patients both at Tucson and Phoenix, so sort of urban and smaller town. And then the study was continued during my time here in Indianapolis. We were able to enroll over 700 patients. They were really diverse in their race and ethnicity. Some of them were inpatients, although most were outpatients, about 80%. And many had complications of their cirrhosis. About 45% had ascites. A third had hepatic encephalopathy. Many had varices. And what we had starting this study is some a priori content domains that we were focused on. One included access to medication. So what obstacles do they face? In addition to that, I wanted to know, did they understand their medications? And specifically, I wanted to know, did they know how to use lactulose and understand its role in cirrhosis management, as well as diuretics, beta blockers? And then also, what did they know about salt use in cirrhosis care? And we wrote this questionnaire at the eighth grade reading level and were able to provide it in both English and Spanish, given our study population. And this survey, once it was developed, really came down to six domains with medication access and understanding breaking out from obstacles to medications. We validated this with other hepatologists who found that the content was relevant and meaningful to patients with liver disease and specifically with cirrhosis. And then we completed a confirmatory factor analysis to really hone down on which questions were most important for which domains. And what we came up with is this knowledge questionnaire that I am calling my cirrhosis coach, largely because it can be used to then coach individuals in improving their knowledge. So this is just a snapshot of the medication access obstacles and sort of understanding domain. Patients are asked to think about what is true in this arena for patients, and they're able to just kind of click through on this electronic survey. This is an example of how lactulose is asked about. So importantly, we only asked about lactulose use for those who are actually taking it. So patients were first asked, are you taking this medication, whether it applied to diuretics or beta blockers. And then they were asked specific questions about lactulose use, as you can see here. And they're given some options for what's correct or that they feel is correct. At the end of the my cirrhosis coach questionnaire, the patient, or if you're doing it with your patient, you're given scores in each of these six domains. An ideal score is three. And so for something negatively worded like the medication obstacles, a three means that the patient did not report any obstacles. Whereas with lactulose use, a three means that they were able to pick all of the right answers and none of the wrong answers. So this is immediately available. I'm happy to share the link later. But this can give you an idea in really some minutiae about where patients with cirrhosis in your practice are struggling and might need targeted information. What's interesting is when we apply this to our patient population, the 700 patients that I mentioned, about 80% had less than ideal medication access or understanding. So many people were talking about obstacles to use, not getting their refills on time, being afraid of side effects due to the medications. Only about one out of three had an ideal score in lactulose use. So there's significant barriers despite being prescribed lactulose. Only about one out of 10 had an ideal score in diuretics, which was really surprising to us as we spend a lot of time in our patients with ascites talking about diuretic use. Similarly, only about one out of 10 patients had ideal knowledge about beta blocker use. For example, not knowing that it reduces their heart rate or their blood pressure or that they should be looking out for these things. And about one out of three did not have an ideal score in salt use. So a little bit better compared to the other domains, but still a significant portion of patients struggling. Another surprising finding is that there weren't that many predictors of knowledge. So yes, there were some predictors we found of access, understanding, and obstacles. But once we drilled down to the specific medications, there were not consistent predictors. This includes gender, ethnicity, education level, income level in our large population. So really knowledge can be independent of these things based on our results. We did notice that patients who had ascites and were asked about diuretic use did a little bit better. Similarly, if they had the complication, they did a little bit better. Similarly, inpatients tended to do better than outpatients, although, for example, medication obstacles, outpatients reported more obstacles to taking their medications regularly. So there were some domain differences comparing inpatients to outpatients. So now that hopefully I've shown you that we can measure cirrhosis-related knowledge meaningfully with some important domains, do we know if these interventions, like intervening on this, can improve outcomes? In the few minutes that we have remaining, I'd like to sort of review some of this data. There have been some studies to answer this question. Unfortunately, many of them, the methods are mixed. So to give you a sampling, these are some studies in the past 10 years. They've used booklets, a leaflet, a video, educational sessions that lasted anywhere from two hours to multiple sessions where patients were brought back and then given a booklet at the end, or using things like UpToDate, the basics that UpToDate provides for our patients. So a lot of different attempts at improving cirrhosis-related knowledge. All of these use non-standardized knowledge assessment tools to look at whether these interventions then improve knowledge. So I won't get into the details of that, but what I'll leave you with is sort of the message that I was left with when I reviewed the literature. The results of these interventions are really mixed. Some domains improved, some did not. I think my overall takeaway is that yes, we can improve healthcare utilization if we improve knowledge. What was very clear is that patients who received this educational intervention, 100% did improve their quality of life if it was assessed in the study. So many levels of anxiety and depression improved if they were given education. So to answer that overall question, can improving knowledge improve interventions? I think the answer is yes, but I think it really depends on how you measure the knowledge and then what is the targeted intervention that you provide. Finally, I do want to give you some options for education. One that I have used and really gotten great feedback about is through the Toronto Group. I believe the study was led by, this resource is led by Dr. Punita Tandon, who's written a lot about knowledge in liver disease. And what they provide through this website is multiple modules around cirrhosis care. There are modules around chronic liver disease that you can point your patients to. And what's really great about this tool is that you can actually prescribe it. So you can go in as a provider, put in the patient's email, pick the educational tools that you want them to get and send it out over email. And what's great about this is if you focus your visit, for example, on diuretic use and you adjusted diuretics and talked about a low salt diet, you can specifically pick education about ascites and why cirrhosis, why that happens in cirrhosis, what does a low salt diet mean, and what do diuretics do? So really targeted interventions. And if you partner this with my cirrhosis coach, you can administer my cirrhosis coach, find out where the patients are maybe less than ideal or deficient in their knowledge, and then go online, prescribe this education, and then have patients come back and tell you how they're doing by readministering the my cirrhosis coach. Finally, what's out there, and I think what's really exciting is that there are going to be artificial intelligence, so chatbots that can improve our patients' knowledge by interacting with them on a more day-to-day basis. So this is a pretty cool study that was just published this year where they created a liver chatbot called Lucy the Liverbot and pre-programmed it with a lot of information about cirrhosis-related care and complications. They used a platform that doesn't require any code, so the folks who actually put this knowledge and bot together were pharmacists, hepatologists, nurses, case managers, so really healthcare providers were able to create this bot. And so far, what they found is that patients found this to be a very trustworthy source of information. Many patients found the interactive feature really helpful, meaning that they could come back and forth to it depending on the time that they had, so some exciting times for improving knowledge in our liver disease patients. So we're kind of at the end of our hour, so I'll just stop here and say I hope what you'll take away from our time together is that measuring liver disease knowledge is really a first step in addressing the burden that cirrhosis patients feel, their families feel, that we as healthcare providers and the healthcare system feel. I think My Cirrhosis Coach can be used to measure this knowledge really efficiently and in a very targeted way. It's been validated in a diverse population and is ready to go, and it will allow us to prescribe targeted education, and there's already some great educational material out there, and I think this education is really an important pillar for patient-centered cirrhosis care. I'll stop there. Thank you. Thank you so much, Archita, for that amazing talk, really important work that you're doing. So just a reminder to the audience, if you have any questions, please type them in the Q&A box, and we'd be happy to present them to the speakers. While we wait for that, I'll begin with a question that I have for Callie. You know, one of the things I found really interesting, I think, is one of the first things you presented, where there's really low concordance between the definition even of safety net hospital. It seems like it's a very basic that that may impact not just research, as you mentioned, but also funding, either at the state or federal level or however county. So one of the questions I had was, how do you think that lack of consensus has impacted funding or research, and how many do you think may be classified inappropriately? Is that a problem where hospitals are being called safety net that actually should not be classified in that way? Yeah, that's a really, really good question. I'm by no means an expert in the whole financial and political areas of social net funding, but I think it's not so much that. I think defining a hospital safety net is probably not as important as matching, again, matching what their needs are in terms of the amount of resources they have, the amount of uncompensated care, right, the lower amount of money that they will get for the care they're providing to the policies that are giving them that money. So my understanding of the issue is that because we're using different definitions, or also the policymakers are using these definitions and then like segregating hospitals into need, safety net need versus not taking that need there, it's the more issues that a lot of hospitals aren't getting what they should be getting based on the way we're currently defining things, which is where that idea of a continuous disadvantage marker will potentially be helpful because then it's really a spectrum, every hospital is a spectrum. So potentially, the amount of uncompensated or Medicaid care you're providing is going to be not just high versus low, but really this is the amount and therefore this is the amount of money you should be getting from the government for the services you're providing. That's my basic understanding, but there's a lot of people out there who are really working on this from a more policy perspective. Great, thank you so much. I think we have a question in the chat. Dr. Muhammad, do you want to pose that one? So this question is a question for Dr. Desai. Have you investigated the impact of these educational interventions utilizing before and after my sclerosis coach assessments? Not yet, but great, great idea and great question. That's certainly what we're working on now is to see how intervening, hopefully with a validated standardized tool, sort of patient-friendly material, how that will improve health care outcomes. And I'll say that the many of the studies, like I mentioned, had focused on health care utilization, but quality of life is another important outcome that we're working on. And I had another question for you, Dr. Desai, about, you know, you mentioned that, I think, unless I mix this up, but that patients who were outpatients generally had lower knowledge than inpatients. And do you think that that is due in part to just under-recognition of cirrhosis in this population, which we know is an issue? There's especially patients with kind of very compensated or subclinical cirrhosis where they haven't even yet, they just might have low platelets. Provider hasn't even told them they have cirrhosis. Do you think that that's why, you know, they're not presenting in such of a like dramatic fashion that that's impacting those patients' level of knowledge? And then is there any data on that kind of impacting those patients downstream in terms of outcomes or readmissions, whether like kind of their initial presentation? Great question. Well, I wish I could say it's because patients didn't even know they had liver disease, but these are all people who are coming to the liver clinic for cirrhosis care. So they all, I think, know that they have cirrhosis. In my cirrhosis coach, we sort of assume that patients know about their liver disease. We don't ask about it, but they're coming to the liver provider. They were coming to hepatology clinic. So I think, but these are patients, for example, they did not get asked about diuretic use unless they were on diuretics. So the fact that outpatients don't know as much to me is a signal that our outpatient care time, the time we spend less of it is on education and our patients are walking away, not knowing what they should. So to me, it was actually a signal that while there's been a lot of work on the inpatient outpatient transition and reducing readmission, we really need to also focus on the outpatient population. And what you bring up is a really important point. What I don't know yet, and I don't think there are any studies about this, is if you improve outpatient knowledge, can we reduce the risk of decompensation or at least not decompensation, but initial hospitalization? Can we, you know, engage patients sooner with lifestyle modifications to prevent hospitalization for ascites or encephalopathy? So that data is not out there. There are some studies that looked at pre post education intervention and complications, but they didn't adjust for liver disease severity, et cetera. So kind of muddied data. Great. And I know we're coming up really close on time, but this was an interesting question. Maybe we could have both panelists quickly address from Dr. Zhang. Do you think patients with different etiologies of cirrhosis or chronic liver disease, whether it be, you know, MASL versus ALD might be differentially affected by these barriers and challenges? And maybe some of that goes to recognition of disease early, but interested to see what you both have to say about that. I can quickly go first. Yeah, I think definitely there's going to be differential effects of these barriers and safety net systems for these two populations. And like Nicole referred to, I think it has to do with sort of acuity of illness, right? Alcohol patients tend to come in very, very sick with very, very high melts, a lot of inpatient evaluations for their disease, potentially for transplant. And actually one of our studies looking at weightless mortality with the social determinants of health index, we demonstrated that there was an interaction between etiology, specifically alcohol and weightless mortality. So alcohol patients coming from the lowest social determinants of health neighborhoods actually had the highest weightless mortality. So I think the social issues around alcohol and its related social determinants of health are probably compounded more so than the MASH patients, but certainly our MASH patients also face a lot of barriers within the safety net context regardless. Yeah. And I'll just add to that. I a hundred percent agree. Although I'll say that it may be that those social determinants are the mediators between knowledge and the type of liver disease and not really determinants, but certainly the type of information they need to hear, the type of behavior change we're asking is similar. And so I think really any knowledge intervention tool around liver disease, especially when it's end stage can target both populations. Thank you. Thank you. And then this final question is, have there ever been considerations, either Dr. Zou or Dr. Desai can answer this, but have there been considerations for partnerships with ACP, AGA, or family practice organizations or other healthcare providers regarding some of the tools discussed today? Yeah, really, really important. Dr. Kazi always has great questions thinking forward. I think my approach to this, so I'll leave it there, is my approach is to really partner with our healthcare EMR and be able to prescribe this and send this out to patients directly. Partnering with larger national organizations might be a great way to have that policy towards EMRs adopting education as something that we can prescribe is probably the approach I would take next, but just trying to get it done locally so that our EMRs can incorporate this kind of education and give targeted prescriptions is sort of my first step. Yeah, no, I think that's a really great point. Some of the work that we've been doing around provider perceptions of transplant referral, I think has brought to light for me that there's a lot of education that needs to be done among providers. And I think through these societies is one way, though I worry a little bit that these societies include primary sort of academic physicians less so than the community ones out there that are really going to make the biggest impact on referrals. So somehow disseminating, I think, beyond our own societies into maybe primary care societies or other groups might be potentially even more beneficial. But definitely the next step we're thinking about is trying to improve the education of providers around transplant referrals through these societies and other groups. Well, I think that was our last question. I think we're up against the time. I don't know if Shilpa or Jeff had any other comments to end us out with, but thank you everyone for joining us. This was really wonderful. Thank you, Dr. Zou, Dr. Desai for the amazing talks and the important work that you're doing. And we look forward to kind of hearing more about the data on the outcomes with some of your interventions that are really novel. So thank you both. Yeah, thank you. Thank you everyone for the speaking. Thank you. Yeah, thank you very much, everybody. This was great. Thank you everyone. Take care.

webinar

cirrhosis care

safety net hospitals

healthcare affordability

disparities

vulnerable populations

socioeconomic disparities

health literacy

knowledge-related barriers

education interventions

Joe Biden

Kalimantan