Palliative care & chronic liver disease: barriers to care, health disparities & the role of health literacy

Introduction

The landscape of chronic liver disease (CLD) in the United States (US) has significantly changed over the past few decades with cirrhosis now being the 4^th leading cause of death among persons between ages 45–64 years (1). Globally, cirrhosis is the 10^th leading cause of death, and hepatocellular carcinoma (HCC) is the 3^rd leading cause of cancer-related deaths (1). With over 50,000 deaths each year, there has also been substantial increase in health care-related spending in the past two decades related to CLD (2). With the advent of effective antiviral therapies, the burden of disease has shifted from viral hepatitis to alcohol-related liver disease (ALD) and metabolic dysfunction-associated steatotic liver disease (MASLD). With the substantial increase in alcohol consumption in the general population over the past two decades, ALD mortality increased between 2006 and 2017 with acceleration during the coronavirus disease 2019 pandemic (3-5). ALD is the leading indication for liver transplantation. MASLD, considered the silent epidemic and now the most common cause of CLD, will overtake ALD over the next decade as the leading indication for liver transplantation (6).

Cirrhosis carries significant health risks with high morbidity and mortality, causing significant economic burden on the health care system and society. In addition to the life-threatening complications from portal hypertension, these patients bear considerable psychosocial and financial burden, experience stigmatization, and struggle with lack of education and understanding of their disease (7,8). Additionally, structural, social, and health inequities are challenges often faced in the CLD population. All these complex factors result in impaired quality of life (QOL), loss of productivity, increased mortality, and healthcare utilization, and may contribute to health disparities (9-11). There is a growing recognition in the global hepatology community regarding the critical role of palliative care (PC) in the CLD population given such complex care needs. Established evidence has demonstrated that PC in non-cirrhotic patients is associated with improved QOL, lower healthcare costs, less aggressive end of life care, improved communications between care teams, and better caregiver outcomes (12-20).

As we strive to meet the complex needs of this patient population by providing timely, comprehensive, patient-centered, holistic care, we must not forget health disparities that exist can negatively impact every facet of care for these patients; thus, further amplifying morbidity, mortality, QOL, and health care utilization. Therefore, addressing health equity has become center stage in tackling health disparities in CLD. There is an urgency to create interventions that optimize access, inclusion, patient empowerment, and equity in our vulnerable patient populations. Unfortunately, hepatologists have been ill-equipped and are not formally trained to address these complex and multifaceted issues. Both the American Association for the Study of Liver Disease (AASLD) and the American Gastroenterological Association (AGA) have released a guidance document, underscoring the value of PC and symptom-based management in cirrhosis with a growing body of evidence supporting the integration of curative and PC approaches (10,13).

In this review, we address challenges to PC in CLD and the evolving role of PC integration in CLD. We will discuss both patient and health care provider-related factors that contribute to barriers including the lack of education and understanding, and lack of clear guidelines for health care providers (13). We will further explore barriers to health equity in PC and CLD. We place a spotlight on health literacy, also known as the heart of health equity, and its fundamental role in the successful delivery of patient-centered care. Finally, we will identify areas of future research and provide recommendations on how we may address these gaps and barriers in CLD. More momentum is needed for high-quality research within the intersections of CLD, PC, and health equity that can lead to the creation of effective, impactful, and sustainable interventions.

PC in CLD

Challenges of cirrhosis management

The challenges in the management of cirrhosis characterized by the “compensated” and “decompensated” phase are well known. Decompensated patients can have periods of relative stability alternating with sudden decompensating events resulting in recurrent Emergency department visits and hospital admissions which often creates unpredictability in disease trajectory, making supportive care even more challenging (14). The decompensated phase of cirrhosis is often characterized by heavy symptom burden and morbidity for patients leading to high healthcare utilization and financial burden (21). It is characterized by significant complications such as hepatic encephalopathy (HE), variceal hemorrhage, ascites, sarcopenia, and can further lead to development of renal failure, and/or infection and sepsis, resulting in high rates of mortality (22). The unpredictable trajectory of decompensated cirrhosis has made it difficult for providers to know the optimal timing of PC involvement, advance care planning (ACP), and end of life discussions (23).

Regardless of transplant eligibility, patients universally have decreased QOL and often develop significant symptom burden including fatigue, chronic pain, pruritus, frailty, sarcopenia, erectile dysfunction, shortness of breath, insomnia, muscle cramping, poor appetite, depression, and anxiety (23). For patients in the compensated phase, the median survival time is generally >12 years compared with the decompensated stage with a general expectancy of 2 years without a transplant (24). The only definitive, curative treatment for end-stage liver disease (ESLD) is transplantation, and without this, ESLD is terminal.

Given the uncertain trajectory in ESLD, prognosis is often difficult to determine. Both the Child-Turcotte-Pugh (CTP) and Model for End-Stage Liver Disease (MELD) scores are used for prognostication. Since 2002, the MELD score has been used to prioritize deceased donor liver allocation for patients waiting on the transplant list, reflecting 3-month mortality prediction. The latest version, MELD 3.0, includes additional variables to improve prediction accuracy and gender equity (25). It should be noted that in addition to symptoms described above, other significant factors such as caregiver burden, HE, and ascites are not captured in MELD assessments, and do not fully reflect QOL concerns. Thus, many patients can experience prolonged high symptom burden for months to years while awaiting transplantation.

Definition of PC

PC is defined by the World Health Organization (WHO) as specialized medical care for those patients with serious illnesses, focused on alleviating patient suffering and improving QOL. PC can be incorporated in the care of all patients with a serious illness regardless of age, diagnosis, setting, or prognosis. PC is unique in that support can be provided concurrently with aggressive care or near end of life when transitioning away from curative therapies. PC aims to provide multifaceted care by addressing physical symptoms and psychological suffering, as well as psychosocial factors to help improve QOL. This support can be provided in several ways including symptom management, goals of care, ACP discussions, as well as coordination of care and additional support for both patients and their caregivers.

Generalist vs. specialty PC

PC can be provided by various healthcare providers in multiple settings concurrently with curative therapy at any stage of the patient’s illness. PC services usually consist of an interdisciplinary team of nurses, physicians, social workers, aides, and chaplains to provide comprehensive care to patients with life-limiting illnesses and provide extra support in addition to the patient’s primary care team. The early use of PC has been shown to improve patient survival with metastatic cancer, improve QOL, and reduce costs of care; thus, providing benefits to patients and health systems alike.

One of the key challenges to PC integration remains the availability of PC specialists. Specialty PC, indicating additional training and certification in the field, is an often-limited resource and may not be widely available, particularly in underserved areas leading to continued gaps in care. There is an increasing recognition of these gaps in care and a push for more routine PC integration in CLD, delivered by the disease specialist/hepatologist, or what we will refer to as a generalist PC. If the integration of PC into CLD management would help improve QOL, all clinicians and disciplines have a responsibility for timely PC intervention, whether via generalist PC with their primary provider or referral to specialty PC services as available. For the context of this review, we will focus on the promotion and integration of generalist PC delivered by the patient’s primary hepatologist.

PC vs. hospice

PC and Hospice care are often used synonymously as both teams focus on alleviating suffering and improving QOL; however, it is important to note key differences. Both PC and hospice provide interdisciplinary support for patients and caregivers, but hospice care is for those patients with a life expectancy of 6 months or less who have chosen to forego curative treatments. The National Coalition for Hospice and Palliative Care (NCP) guidelines focus on 8 domains for quality PC (Table 1), which may also serve as a guide for Hepatologists focusing on primary PC (26).

Role of PC in CLD management

Since the release of both the AASLD and AGA guidance review, PC has been gaining more attention and traction among gastroenterology and hepatology communities regarding its integration in CLD care (10,13). A multidisciplinary team model is an integral part of delivering patient-centered, comprehensive care and can help address concerns of both patients and caregivers, regardless of transplant status (Figure 1).

Figure 1 Multidisciplinary, complex care management in CLD. CLD, chronic liver disease; ICU, intensive care unit.

PC involvement can provide crucial support for both the medical team and health system, with growing evidence supporting the benefits of PC in CLD care. For patients with decompensated cirrhosis and HCC, PC has been associated with health care system savings, improved patient satisfaction, QOL, end of life care, as well as decreased length of stay with overall cost reduction and reduced resource utilization (19,27,28). One retrospective review assessed the rate of early PC referral (at least 30 days before death) in patients with ESLD and its impact on survival and resource utilization. The study found that among 74 patients, the rate for early PC referral was 19%. While the survival did not change, higher rates of outpatient PC and ACP, lower number of blood transfusions, endoscopies, and lower hospitalization costs were seen (19).

PC also helps reduce overall symptom burden (13), as highlighted in a quality improvement study that aimed to improve mood and symptom burden in liver transplant candidates by focusing on early PC intervention. This study found 50% of moderate to severe symptoms improved (P<0.05), as well as improvement in depressive symptoms for approximately 43% of patients with implementation of a longitudinal multidisciplinary early PC intervention. Additionally, referral to outpatient PC services in patients undergoing liver transplant evaluation has been shown to improve psychological and physical symptom scores (15). Active management should be combined with ACP to prepare for deterioration even if patients are being evaluated for liver transplant or are active on the transplant list. For patients and families weighing pros and cons of liver transplant, PC can still play a key role with ACP and hospice discussions with informed decision making to understand options and benefits of all care pathways (13).

As there remains limited data on PC integration in CLD, we eagerly await results of the PAL Liver study, a multicenter, prospective, cluster-randomized comparative effectiveness study comparing PC delivery by trained hepatologists vs. consultative PC services. With 1,260 patient-caregiver dyads enrolled among 14 clinical centers, a PC checklist was used, and the PC interventions occurred over four visits with follow-up assessments at 6, 9, and 12 months. The primary hypothesis for the study is an improved QOL if PC is delivered by the patient’s hepatologist, given the established patient-provider relationship and hepatologist expertise of the underlying disease state. The primary outcome is to assess change in QOL within 3 months; secondary outcomes included depression, distress, symptom burden, caregiver burden and QOL, goal concordant care, satisfaction with care, and health care utilization (23,29).

Barriers & gaps to integration of PC in CLD

As growing evidence supports the benefits of PC integration in CLD, we further explore barriers and gaps through the lens of structural, societal, and health inequities. For every patient to have equal access to high-quality, patient-centered PC, we must first identify barriers and gaps from a multi-level perspective that can guide the development of targeted interventions to ensure the successful delivery of such comprehensive care models for all. Here we review: (I) lack of knowledge, understanding and training regarding the role of PC and how it relates to CLD both from health care provider/patient to health systems; (II) social determinants of health (SDOH), an influencer of health equity and driver of health disparities, and how this affects our patient populations; and (III) health literacy, an important determinant of outcomes which has potential impact on CLD management and receipt of PC.

Lack of knowledge, awareness & training

There are multiple barriers to the successful implementation of PC in hepatology. This includes: (I) shortage of specialty PC providers; (II) stigma that PC is synonymous to “giving up” on curative treatments; (III) lack of provider training; (IV) lack of clear roles among the different health care providers; and (V) many symptoms experienced by patients with CLD that are highly liver specific and managed longitudinally by the hepatology team. This contrasts with the oncology practice models in which PC teams provide symptom management and supportive care across the spectrum of a patient’s cancer journey (30).

At the present time, there remains confusion on when to refer patients to PC during CLD care given the lack of systemic screening tools to identify patients with need for PC services (10). Moreover, there is insufficient PC education during medical training and this inexperience is further compounded by health care providers’ discomfort with complex discussions, hesitancy, or unfamiliarity on how to broach serious illness discussions, prolonged time requirements, and high emotional needs.

While guidelines often recommend PC involvement in other chronic illnesses such as cancer, end-stage renal disease, and heart failure, patients with CLD often do not receive the same support in this area. Even between chronic illnesses, there remains a wide variability in PC and hospice utilization. A recent cross-sectional, observational study demonstrated that only about 30% of hospitalized patients with decompensated cirrhosis received PC consultations during admission, and referrals were usually initiated in very late stages of the disease (27). With the prognostic uncertainty of the natural course of cirrhosis and the high number of specialists and teams that become involved in care later in the disease stage, this can at times create confusion and conflicting information regarding prognosis and goals of care; thereby, delaying referrals and care planning discussions (21). Other physician-driven causes are the focus only on life-saving interventions, overestimation of survival, or discomfort with having end of life discussions. In cirrhosis, there are significant limitations surrounding ACP discussions and uncertain prognosis, which is often reflected by aggressive care measures and high healthcare expenditures at the end of life; thus, making PC involvement even more essential (21,28).

Health disparities and SDOH in CLD

While the topics of health disparities in each of the areas of PC and CLD are well beyond the scope of this review paper, we explore some of these challenges in our CLD patient population and in the context of PC. Here, we highlight certain themes of disparities including SDOH within the intersections of CLD and PC.

SDOH is defined as nonmedical factors that contribute to health disparities and inequities and include the conditions and environments where people are born, live, learn, work, play, etc., and affect health outcomes and QOL. SDOH are grouped into five domains: (I) economic stability; (II) education access/quality; (III) healthcare access/quality; (IV) neighborhood/environment; and (V) social context (31). SDOH also includes racial, ethnic, or gender related factors, and can have a significant impact on disease burden, access to care, and outcomes. Marginalized communities and low socioeconomic status areas have been disproportionately affected by the increased burden of CLD, exacerbated by SDOH. One systematic review showed that patients with CLD from low socioeconomic status deprived areas or with unfavorable SDOH had higher hospital readmissions and mortality (32). Here, we focus on the two highest causes of CLD in the US (ALD and MASLD).

ALD

Around 50% of patients with alcohol use disorder (AUD) are estimated to have ALD and 15% to have cirrhosis. Racial and ethnic disparities in patients with ALD exist and are likely related to socioeconomic disadvantages and racial discrimination. One study observed mortality trends in ALD in the US from 1999 to 2022, focusing on racial and sex differences and age groups. Increased ALD-related mortality was noted mainly in White, Pacific islander, Asian, and Alaska native/American Native Indian groups. Highest rates of ALD were found in the Alaska native/American Native Indian population, and they were disproportionately affected by alcohol use and had the highest rates of ALD (33).

Further, socioeconomic inequalities have been found in the incidence rate of ALD. One study investigated the incidence of ALD based on age and low socioeconomic status from 2009 to 2018. The study found that 86% of patients with newly diagnosed ALD had a low or medium low educational level with an 80% unemployment rate. An inverse correlation between educational level and incidence rate of ALD was noted. They concluded that there are socioeconomic inequalities in ALD incidence in patients from ages 30–69 years (34).

Another study observed the implementation of SBIRT (screening, brief intervention, and referral to treatment) by demographic characteristics. Data from 2015 to 2019 among adults with at least one alcoholic beverage within the last year were collected. They found that Asian, Black, and Hispanic patients and patients without insurance were less likely to be screened for AUD. Asians were also less likely to be referred for treatment of AUD and Black patients less likely to undergo treatment than Whites. They concluded that addressing these disparities could improve outcomes in AUD (35).

MASLD

While 30% of the global population is affected by MASLD, the incidence of cirrhosis secondary to MASLD doubled between 1990 and 2017 (36). Factors such as dietary patterns, genetic predisposition, environmental factors, healthcare access and utilizations, and low socioeconomic status play a role in the prevalence and severity of MASLD. The lowest prevalence has been reported among non-Hispanic Blacks and the highest prevalence in Hispanics, non-Hispanic Whites followed by Asians (36). The awareness for MASLD in the general population in the US is low. A retrospective cohort study identified racial differences in screening rates for MASLD and referral for elevated liver enzymes within a high-risk pediatric population. They found Black children had higher rates of screening for MASLD with higher rates of elevated liver enzymes (74%) compared to non-Hispanic White and Hispanic children (54% and 50%, respectively). However, referral rates for elevated liver enzymes for Hispanic and non-Hispanic Whites were significantly higher (92% and 87%) compared to Black children (17%). The study observed racial/ethnical differences in MASLD screening and referral practices (37).

Health disparities in PC & ESLD

Health disparities observed in healthcare delivery and outcomes in PC within the ESLD patient population are also experienced by gender minorities, ethnic and racial minorities, rural communities, and those who are socioeconomically disadvantaged. For example, a wide variance among racial and ethnic minorities has been observed in receiving PC services. A retrospective cross-sectional analysis described trends in the location of death in ESLD patients, with locations divided into home, hospice, nursing, or inpatient facility. White patients showed the highest rate of death at home or hospice compared to Asians, American Native Indians, and Blacks. Black patients had significantly lower odds of dying in hospice or at home. Hispanics had significantly higher odds to die as inpatients or at nursing homes while Whites had the lowest odds to die while inpatient or at nursing homes compared to Asians, American Native Indians, and Blacks. They also found that patients from the southern US had the highest rate of hospice death suggesting disparities in hospice use by regions. They concluded that even though the proportion of Black patients dying at home or at hospice is increasing, there is still a disproportionate number compared to White patients indicating the need for culturally targeted approaches to end of life care and to improve access to ACP (38).

One retrospective cohort study assessed the use of PC services amongst 39,349 hospitalized adult patients in the US with ESLD, with at least two events of liver decompensation. Insurance coverage and Hispanic race were factors associated with a lower rate of referral to PC. PC referrals were more common in large hospitals and West Coast hospitals. Compared to the lowest quartile of income, the median zip code income quartile showed higher rates of PC referral. The study concluded that ethnic, socioeconomic, and geographical barriers to access of PC do exist (39). Another retrospective cohort study investigated disparities in the utilization of PC services in patients with ESLD in the US and found that Hispanics had a longer hospital stay and higher hospitalization costs possibly explained due to delayed referral to PC services. They concluded that earlier access to PC services could lead to cost savings and improved QOL in patients with ESLD (40).

Health inequities through the lens of health literacy in PC and CLD

Health literacy is a multi-dimensional complex concept interlinked with SDOH and health inequity and is gaining more attention as one of the central determinants of health and a contributor to poor patient outcomes (Figure 2). The WHO defines health literacy as “representing the personal knowledge and competencies that accumulate through daily activities, social interactions, and across generations. Personal knowledge and competencies are mediated by the organizational structures and availability of resources that enable people to access, understand, appraise, and use information and services in ways that promote and maintain good health and well-being for themselves and those around them” (41,42).

Figure 2 Health literacy—a multi-dimensional concept. APP, advanced practice provider.

Defined by the Institute of Medicine as the capacity for patients to obtain, process, and understand health information/services for informed decisions, health literacy is a critical component of high-quality care in chronic disease management (43). It should be emphasized that health literacy is not only obtaining or improving knowledge; it is a skill-based process that involves the incorporation of knowledge into sustainable action that promotes and maintains health and the health of others. The goal is for patients to take responsibility for their personal health (44).

Although well-studied in non-liver chronic diseases, health literacy research in CLD remains scant and nascent. While there remains limited research between health literacy and CLD, and CLD and PC, there are no known studies to our knowledge evaluating the intersections of CLD, PC, health inequities, and health literacy. We introduce this fairly novel and multi-dimensional concept of health literacy in the context of CLD and PC.

Why is health literacy important in CLD and PC?

Poor health literacy is a global public health concern and has become a priority in addressing health and chronic disease management (44,45). Poor health literacy is also a cause for increased health care utilization and mortality, communication difficulties between patients and health care providers, poor adherence to health care services, and lack of knowledge of disease processes (46-52). Health literacy plays a critical role in the effective management of chronic disease and is essential to addressing health inequities and improving outcomes. It is important to recognize critical key determinants in health literacy which include the patient’s ability to: (I) obtain and use health information to make health decisions; (II) access care in the community; (III) structure self-care; (IV) promote provider-patient interactions; and (V) navigate the health care system (53).

In the context of PC, low health literacy is a known barrier to patient engagement in shared decision making. Low health literacy and lack of understanding and awareness of the importance of health literacy and its role in patient care have been observed in both patients and health care providers. Furthermore, low health literacy has been associated with poor health outcomes in PC, thus perpetuating health inequities in vulnerable and disadvantaged patient populations (54). Those who are socioeconomically disadvantaged may have less understanding, awareness, access, and therefore, use less of these different health services, including PC. Concomitantly, there is also a lack of awareness in assessing level of health literacy in the care of patients from the primary medical team (55,56).

There are limited studies in health literacy and PC. Many of the studies published are small and qualitative in nature pertaining to chronic kidney disease, heart failure, and chronic obstructive pulmonary disease (COPD), often using traditional health literacy assessment tools (57-59). One study evaluated communication and shared decision making with patients with limited health literacy, and how to develop strategies to address barriers to improve this in the hospital-based PC setting (60). This qualitative interview study showed that health care providers recognized limited literacy as a concept; however, they did not recognize limited health literacy. Five themes emerged from interviews including communication skills, time management, content being delivered, need to tailor information, and the individual characteristics of patients and caregivers. According to health care providers, more time to communicate with their patients could resolve the most prominent barriers found in this study. Future research should be directed towards opportunities for tailoring communication and the extent to which limited knowledge and complex information affect communication and shared decision making.

One qualitative-based study evaluated ACP and health literacy in older dialysis patients and found low health literacy associated with limited engagement in end of life care planning, higher hospitalization rates, and increased mortality. They concluded that improving health literacy through enhanced patient education and improved communication skills training for health care providers was necessary to promote patient participation in shared decision making that aligned with patient values and wishes (57). These studies highlight the critical components of identifying and assessing health literacy in PC with interventions through education and communication that can promote patient engagement in shared decision making (57,60).

Assessing health literacy

Traditional health literacy assessment tools have only approached health literacy as a one-dimensional concept focusing only on functional health literacy, defined by reading, comprehension, and numeracy. With the evolution of research in the health literacy field, health literacy experts agree that the true definition of health literacy is complex, heterogenous, and multi-dimensional (44). Most studies in health literacy have used the widely known Rapid Estimate of Adult Literacy in Medicine (REALM), Test of Functional Health Literacy in Adults (TOFHLA), and Newest Vital Sign (NVS) (61-63). REALM and TOFHLA primarily focus on functional health literacy, while NVS is a short clinical screening tool that assesses reading comprehension and numeracy. They are convenient and quick to use in the busy clinic context; however, these health literacy tools fail to capture the full breadth of ideas that are embodied in the latest multi-dimensional definitions of health literacy. It is likely these assessments have underestimated the true effect of health literacy on health inequities. These tools are shown to have substantive psychometric weaknesses and could potentially create stigmatization. More importantly, these tools poorly discriminate and do not provide insight into actions that could translate into intervention to improve health literacy (64,65). We challenge the traditional measurement tools of health literacy and advocate for the utilization of validated assessment tools that are used in appropriate contexts and can capture the true multi-dimension of what defines health literacy in a specific community being evaluated.

Addressing gaps & barriers in care

Health care provider/trainee focused approach

It should be emphasized that PC training and PC competencies for hepatologists have never been formally developed and are not routinely included in gastroenterology/hepatology training. Fully implementing PC in hepatology care will require a multiprong approach that addresses the current limitations of training, practice, evidence-based research, clinical innovation, and culture change. More research is needed to identify the optimal approaches to train specialty providers in primary PC skills, symptom management, and developing innovative models of care that can be successfully integrated and customized for distinct specialty disciplines such as hepatology. Key concepts for education for hepatologists include eliciting and documenting values and goals, communicating prognosis, delivering care concordant with the patient’s values and goals, and identifying and documenting the patient’s surrogate decision maker.

As part of the PAL Liver study, DeNofrio et al. developed an online training program called “Palliative Care Always: Hepatology” for the learning of primary PC skills for hepatologists. The course is based on different scenarios of ESLD including delisting from liver transplant list, transplant eligible vs. ineligible, uncertain prognosis, and acute episodes of decompensation. The aim of the course is to educate hepatologists on PC skills through a series of 11 modules. These learning modules include reading and videos with pre-and post-assessment modules based on content directed to clinical practice, PC resources, and vignettes on how to assess and address the needs of ESLD patients and their caregivers (66). This could be added as complementary training to the published society’s guidance and expert review (AGA, AASLD), which can enhance the integration of PC skills and services into CLD management for hepatologists (10,13,29).

Interdisciplinary training and tailored educational opportunities are crucial to spread awareness and integration of PC. Fellowship subspecialty training in PC as well as additional training at residency levels is vital for understanding the basic principles in PC, particularly since early PC and ACP intervention have been shown to be beneficial (24). All of these can be incorporated in training to prepare the next generation of physicians and can start the process of culture change and practice (Table 2). In addition, rotations on PC consultative services can offer trainees training and hands-on experience, which will likely provide the most effective educational experiences. This type of training can help non-PC providers strengthen skills in initiating open conversations, performing individual assessments to help identify burdens of disease and psychosocial needs, and astutely recognize when formal PC consultation may be warranted. In general, if patients either have significant disease burden or symptoms impairing their functional status or QOL, PC involvement should be considered regardless of care goals, whether curative or comfort focused for end of life (10).

Patient-community focused approach: addressing health literacy gaps

Further understanding is needed on health literacy and its relationship to barriers to care in the CLD populations. The goal of addressing health literacy is not only to improve education and knowledge but to facilitate behavioral change through patient empowerment, engagement, shared decision making, and the development of self-management skills that lead to sustainable optimal health outcomes. The WHO in its health literacy development for the prevention and control of non-communicable diseases and the Sustainable Development Goals of “Leave no one behind” calls for tackling health literacy effectively with the focus on a whole-of-society approach (67). Health literacy is an understood social practice, and the unique experiences and cultural norms of different communities and cultures determine decisions about health. In addition, each of these communities is impacted by organizational and political factors that must be taken into account. For health literacy development to be effective where high-quality, patient-centered care is received equitably by every individual and their communities, it will be important to take these factors into consideration and to identify the health literacy needs and strengths of each different community and population group (53). How we approach health literacy and health inequities as health care providers will require a paradigm shift of health care providers/institutions initiating engagement directly with local communities, local leaders, and stakeholders. This will require engagement with a posture of cultural humility and the building of trust between the health care provider/health care system and the vulnerable communities we serve (45).

We propose health literacy interventions in PC and CLD at two levels: (I) health care provider, trainees/health system to receive education and training in health literacy and its role in health equity, and be able to assess and understand barriers, relevant determinants of health and disparities in the various patient communities they serve; and (II) we need high-quality, high-impact health literacy research using appropriate health literacy assessment tools that will accurately capture the multi-dimensionality, and strengths and limitations of health literacy of the target population. This will require understanding of the communities and their individual experiences in real-world settings. Each community is unique, and assessment of health literacy cannot be done with a cookie cutter approach. These should be the impetus to create sustainable interventions of health literacy development that are appropriate for the context of the community, co-designed, and fit for purpose, done with cultural sensitivity that addresses the unique needs of the patient and their community (45).

Thus far, studies on disparities in CLD have not focused much on important health risk factors and health-related behaviors, such as health literacy. This represents a significant gap in knowledge. The senior author is currently studying health literacy in CLD to address a national priority by the US Department of Health and Human Services through the “Healthy People 2030” initiative by providing further insight and elucidation of the role of health literacy as an important SDOH that contributes to health inequities, delayed access to care, and poor outcomes in vulnerable patient populations. The author hypothesizes that poor health literacy contributes to the complex causality of health disparities in patients with CLD resulting in delayed access to treatment, increased health care utilization, and poor outcomes. The aims of their study are: (I) to determine the level of health literacy of patients with CLD seen in their institution (tertiary care/liver transplant center/safety net hospital); and (II) identify risk factors associated with poor health literacy scores and its association with outcomes (healthcare utilization, receipt of treatments, QOL).

Because health literacy encompasses both personal, cognitive, affective, and social domains, this study is utilizing the nine domain Health Literacy Questionnaire (HLQ), globally one of the most widely used health literacy measures, designed to uncover mechanisms behind health inequalities to inform intervention development. Each scale measures nine aspects of health literacy measuring its full construct divided into the following categories: (I) feeling understood and supported by healthcare providers; (II) having sufficient information to manage my health; (III) actively managing my health; (IV) social support for health; (V) appraisal of health information; (VI) ability to actively engage with healthcare providers; (VII) navigating the healthcare system; (VIII) ability to find good health information; and (IX) understand health information well enough to know what to do (68).

Preliminary data from this prospective study of CLD patients have thus far shown that patients with ALD have lower health literacy scores in three of the nine domains (“feeling understood and supported by health care providers”, “ability to navigate the health care system”, “ability to find good health information”). High Edmonton Symptoms Assessment (ESAS) scores had lower health literacy scores in seven out of the nine domains (“having sufficient information to manage my health”, “actively managing my health”, “social supports”, “ability to engage with health care providers”, “ability to navigate the health care system”, “ability to find good health information”, “ability to understand health information to know what to do”). High Patient Health Questionnaire-9 (PHQ-9) had lower health literacy scores in eight of the nine domains. High General Anxiety Disorder-7 (GAD-7) had lower health literacy scores in all nine domains. Lower health literacy was overall associated with ALD, anxiety/depression, history of drug/alcohol use, and poorer QOL. History of drug/alcohol use, ALD, mental health disorder, anxiety, and poorer QOL were associated with higher numbers of admissions (unpublished data).

Our novel preliminary data provide opportunities to study future interventions to address poor health literacy, optimize behavioral health and palliative/symptom-based care, and to show its possible effects on patient QOL, reduction of health care utilization, and receipt of timely treatment. This preliminary data will guide our next steps to initiate patient/community engagement in collaboration with hospital/health system leadership to develop a health literacy responsive program for our communities. To tackle the challenges of health literacy through effective actions, we will follow the WHO’s integrated conceptual framework for health literacy development. This will require a whole-of-society approach, including understanding the health literacy needs and strengths of different population groups, identify which groups in which communities are missing out, work with local communities to co-design fit-for-purpose solutions, address local needs, improve access to health information and services, and finally, create enabling environments, particularly for groups in communities experiencing vulnerability. Based on this, our plan is to develop customized, targeted interventions to improve patient care, QOL, and outcomes, and then evaluate with an evidence-based approach the impact on outcomes from the interventions.

Health care system focused approach

Integration of PC services into the multidisciplinary team model in HCC/hepatology clinics can help bridge the gaps in disparities by enhancing timely access and referral to additional resources and support. PC services in patients with decompensated cirrhosis should be a responsibility shared between PC teams, hepatologists, specialist nurses, hospice teams, general practitioners, social services, and patients/caregivers. PC should be introduced early in the care cascade with early education regarding the role and benefits of PC. To ensure PC is delivered in a consistent and equitable way, new models of care are needed to integrate PC into hepatology, perhaps with shared clinics or PC providers rounding with inpatient hepatology teams. The multidisciplinary team care model should also integrate additional support and resources including social work services for both patient and caregiver needs, spiritual support through chaplaincy, and other referrals to community resources such as caregiver or disease-focused support group resources.

In addition, patients who require regular surveillance may benefit from multiple and varied follow-up modalities depending on patient challenges and needs including in person visits (either at home or in clinic), telehealth encounters via phone or video, and continued outreach to the patient’s home if impaired mobility or other economic concerns (e.g., transportation difficulties to clinic). To extend the reach of the workforce, PC training can be provided to psychologists, social workers, and other members to enhance the multidisciplinary team. Further, collaboration between hepatology and PC societies, distribution of information on supports and benefits available, and implementing measures of PC and hospice into quality metrics can better integrate and implement PC services into hepatology care flow.

In addition to developing such clinical infrastructure as described above, advocating for policy change to develop partnerships with hospice agency services and payers would help implement PC into ESLD as standard of care. However, for this to succeed, having evidence-based data to show the cost-effectiveness of this health care model in addition to improved patient satisfaction, QOL, end of life, and even possibly improved survival, would provide leverage. We acknowledge that tackling the challenges of public health/policy change is an important aspect in addressing barriers, but is beyond the scope of this review paper.

Conclusions

With the increasing disease burden worldwide of ALD, MASLD, and HCC, cirrhosis is associated with significant morbidity and mortality as well as increasing health expenditure, considerable symptom burden, psychosocial and financial burden, stigmatization, and caregiver burn out. With such complex care needs, we acknowledge the vital role of PC integration in CLD with patients having equal access to holistic, comprehensive, multidisciplinary, patient-centered care. Growing evidence supports the benefits of PC in CLD care, and is associated with health care system savings, improved patient satisfaction, QOL, end of life care, and reduced resource utilization. Unfortunately, barriers and gaps exist at multi-level that create health disparities in our vulnerable patient populations including unfavorable SDOH, lack of knowledge and awareness from both patient and health care provider as well as low health literacy and the lack of provider awareness of health literacy in patient care.

Gaps in provider and community education must be bridged by medical training perspectives and patient and community initiatives. PC and the multidisciplinary team care model can be leveraged to address health disparities through education, timely access to care, improve symptom burden and QOL, and provide additional health system and community resources. In addition, health literacy is foundational to achieving health equity. Improved assessment tools that truly capture the multi-dimensional definition of health literacy should be utilized in studies to understand limitations and strengths of the communities we serve and their unique experiences and cultural norms and cultures that influence decisions about their health. This will guide our next steps to initiate meaningful patient and community stakeholder engagement to develop strategic interventions that are implementable and driven by “local wisdom”, through a collaborative, co-design, and fit-for-purpose approach (45). This will allow the creation of sustainable health literacy responsive programs for our communities to improve health, well-being, and outcomes.

The integration of PC into CLD management has tremendous benefits across all facets of patient care, but more research and education are needed to aid in this effort. We envision PC integration in CLD management as the future multidisciplinary care model that will help create environments to optimize access, inclusion, empowerment, and equity for our patients.

Acknowledgments

None.

Footnote

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-15/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-25-15/coif). H.M.L. reports a grant from Astra Zeneca and royalties from UpToDate. The other authors have no conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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