TLM 2023: Reduce disease stigma and treatment inequality, build awareness for early diagnosis across specialties, support clinicians with accessible tools, and that's a start.
This was the vision statement penned about 12 months ago by members of a multidisciplinary group of chronic liver disease (CLD) thought leaders from a variety of clinical specialties whose goal was to “identify and explore opportunities to create a ‘groundswell’ of awareness” around the growing clinical burden and challenges associated with managing CLD.
Several of the 8 members of the “working group” gathered this weekend in Boston at The Liver Meeting 2023 for a presentation titled Changing the Course of CLD—Multidisciplinary Working Group: Initial Recommendations for a Groundswell Movement to first, ground the working group’s efforts in stark data on the rapid and disturbing rise of chronic liver disease and its sequelae in the US; second, to advocate for the essential contribution of the patient's voice in any solution; and third, to share the topline takeaways from the working group's investigation and introduce its initial recommendations for support from stakeholder organizations to move US health care toward realizing the group’s vision.
The Liver Trends Report
After an increase of 9% from 2020 to 2021 CLD and hepatic cirrhosis became the ninth leading cause of death in the US, reported Nancy Reau, MD. She added that CLD-related mortality could potentially triple by the end of the decade and that fatty-liver disease associated cancer has “now eclipsed cancer from all other etiologies for liver transplant in the US.” Reau, professor of internal medicine, RUSH Medical College and associate director of solid organ transplantation and section chief of hepatology, RUSH Medical Center, in Chicago, IL, and a member of the working group, walked through other barbed findings from the Liver Health Annual Trends Report, a research effort sponsored by Salix Pharmaceuticals, now in its third year. Key among them, and central to the focus of the working group, she explained, are the significant racial and ethnic disparities in the population with nonalcoholic fatty liver disease, where the burden is highest and growing fastest among Hispanics, among whom the prevalence is estimated to be 1 in 4.
Shortages of specialists and limited access to specialty care for CLD and even to primary care in many rural communities contributes to the disproportionate penetration of the disease and to the trends toward more advanced morbidity and mortality, said Reau. Based on these and related findings around inequities in CLD care access and treatment, the significant role of disparities “is going to have to be part of the conversation” about how to improve patient outcomes if there is to be measurable success, according to Reau.
Low awareness of and comfort with clinical guidelines
Another of the report’s disappointing findings, and a topic that all speakers returned to multiple times during the presentation is the poor awareness among clinicians of national guidelines for screening and management of CLD. This includes approximately half of primary care clinicians, said Reau, adding that “56% of our guideline users are not sure how to translate the information that they have been given into daily practice” and that reflects an increase over last year’s response of a remarkable, dismaying 332%, she commented. A professional society clinical guideline should be a simple tool that offers an “awesome care cascade” that translates into evidence-based care for patients with CLD, said Reau. But, “there is still a disconnect between the information we think we are giving to them and how that information is being used.”
She also pointed out increases over last year’s findings in the importance to survey respondents of using “third-party guidelines,” which means, in turn, that care is going to be inconsistent, geographically, and potentially between specialties. Liver disease information and resources in electronic health records (EHR), such as a liver disease order set, are either insufficient or nonexistent, according to the report, Reau continued; 72% of respondents said the former had become even more important year over year and 40% said the same about the order set. All these deficits in practice-based resources throw up more and significant barriers to an appropriate care pathway for vulnerable patients. These clinicians serve as the primary portal to the health care system for a person with fatty liver disease, Reau emphasized, and they have myriad boxes to check during their time-limited patient encounters—they need tools that are ready at hand and easy to use.
That need for simple navigation is equally essential for patients, said Reau, and as providers of their care, “we need them to understand our recommendations and to believe that following them will be effective, will change their health, or they are not going to engage. We are obligated to help our patients navigate their care, not to dictate their care.”
Reau then turned over the podium for closer examination of the patient’s perspective.
The Pipeline of Death
“How do we get patients out of this pipeline to death?” Larry Holden asked the room full of clinicians who treat patients with CLD. The pipeline, ie, the trajectory of undiagnosed, untreated, or undertreated CLD, is where persons with CLD are relegated when they do not or cannot access care for CLD, no matter the stage of illness. Holden is the chief operating officer of the patient advocacy organization the Global Liver Institute, and also a member of the working group. He expressed his gratitude to the sponsor of the Liver Health Annual Trends Report for ensuring that patients’ voices were of equal volume to the health care professional voices in the effort to “change the course of CLD.” Six patients with liver disease of various etiologies representing patient advocacy groups contributed to answering the question “What do you want from the medical community?” Holden expressed the more personal spirit of the question, which he said is “What is stopping you from getting this care?” He also summarized the patient consensus:
Holden pointed to an underappreciated but prevalent patient barrier to timely diagnosis of and treatment for CLD—social stigma associated with the disease. The first recommendation from the working group for ways stakeholders can support the final vision is to reduce the stigma and treatment inequities of patients with CLD (see Figure below). They feel it within their communities, fearing that others will associate a diagnosis of liver disease with excessive alcohol consumption or drug use, Holden said, and in the Liver Health Annual Trends Report, patients agreed that they sometimes felt the shadow of stigma when meeting with their health care team. The cumulative effects of the difficult symptoms of CLD, the sense of barriers to effective care, the lack of strong social support are associated with “depression…and a decrease in the tendency to seek health care,” Holden emphasized. Interventions are needed to stop the “stacking effect” of negative experiences, preferably before it begins, he noted.
Recommendations of the Working Group
Bruce A. Luxon, MD, PhD, capped the presentation with the final recommendations put forth by the multidisciplinary working group. Luxon, professor of medicine, Anton, and Margaret Fuisz chair in medicine, at Georgetown University and chairperson of medicine and chief physician at Medstar Georgetown University Hospital, opened with a summary of the 5 key takeaways from the working group process, at right:
He then added specifics to the 5 recommendations for stakeholder organization support.
Beginning at the top with the language used to talk about underlying causes of CLD, the group suggests that terms such as “obesity,” “drug abuse,” “alcoholism” be referred to as diseases vs the implied negative behavioral connotations. They emphasize that the new liver disease nomenclature be put into practice immediately. The group encourages thought leaders in the field to begin using MASLD vs NAFLD, and MASH vs NASH when writing, presenting, creating video recordings, etc, and organizations to engage in active promotion of the changes and their meaning. The EHR, the tool clinicians use all day every day, can be used to standardize care, the group states, regardless of the cause of disease or individual lifestyle choices. Once a patient reaches decompensation, Luxon said, the clinical consequences are going to be similar.
Luxon emphasized that health care professionals need to become aware of their own personal biases about liver disease and about patients with CLD and the working group recommends that organizations develop HCP questionnaires to uncover implicit bias. The findings can be used for raising awareness and creating educational resources.
Use media of all types, the group suggests, to increase awareness among HCPs of early signs and symptoms of CLD. Identify specific specialties as priority targets for education and then design materials that will “capture interest in and commitment to earlier identification of CLD.” An example – a webinar for cardiologists that focuses on the importance of cardiometabolic disease in NASH/MASH etiology. Gastroenterologists, endocrinologists, primary care clinicians, OB/GYNs - find out how to specifically engage all HCPs who have an opportunity to move appropriate patients to a next step or to help link them with HCPs who can. Within an organization, expert working groups can be invaluable to develop communications, to host in-service and grand rounds sessions, and deploy other grassroots awareness campaigns.
Add to the myriad of "catchy" and effective acronyms that help guide disease diagnosis in clinical settings, the working group recommends, based on AASLD guidelines, and promote them to primary care, emergency medicine, and others where early signs of CLD may be missed. Critical to stemming the tide of disease progression, Luxon emphasized, is a focus to improve care transitions, an effort that will require facilitating cooperation between CLD stakeholders (eg, physician specialties, payers IDN, etc, at a regional level.
The next step is to ensure that new guidance reaches intended audiences along with education on how to incorporate new features, methods, perceptions, and behaviors into daily clinical practice. Luxon and his working group colleagues refer back to tools used to create awareness for early disease recognition, eg, CME programs, thought leader presentations, EHR capabilities, etc.
The working group recommends surveys of organization members and measuring changes in CLD patient outcomes in organizations that have created and deployed programs aligned with this effort.