Global survey of stigma among physicians and patients with nonalcoholic fatty liver disease.

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Journal of hepatology


BACKGROUND AND AIMS: Patients with fatty liver disease may experience stigma from the disease or comorbidities. In this cross-sectional study, we aimed to understand stigma among NAFLD patients and providers.

METHODS: Members of the Global NASH Council created two surveys about experiences/attitudes toward NAFLD and related diagnostic terms: 68-item patient and 41-item provider survey.

RESULTS: Surveys were completed by 1976 NAFLD patients [23 countries; 51% Middle East/North Africa (MENA), 19% Europe, 17% USA, 8% Southeast Asia (SEA), 5% South Asia]; 825 providers [67% GI/hepatologists, 25 countries; 39% MENA, 28% SEA, 22% USA, 6% South Asia, 3% Europe]. Of all patients, 48% ever disclosed having NAFLD/NASH to family/friends; most commonly used term was "fatty liver" (88% at least sometimes); "metabolic disease" or "MAFLD" were rarely used (never by >84%). Regarding various diagnostic terms perceptions by patients, there were no substantial differences between "NAFLD", "fatty liver disease (FLD)", "NASH", or "MAFLD". The most popular response was being neither comfortable nor uncomfortable with either term (56%-71%), with some greater discomfort with "FLD" among the U.S. and South Asian patients (47-52% uncomfortable). Although 26% of patients reported stigma related to overweight/obesity, only 8% reported history of stigmatization or discrimination due to NAFLD. Among providers, 38% believed that the term "fatty" was stigmatizing, while 34% believed that "nonalcoholic" was stigmatizing, more commonly in MENA (43%); 42% providers (GI/hepatologists 45% vs. 37% other specialties, p=0.03) believed that the name change might reduce stigma. Regarding new nomenclature [metabolic dysfunction associated steatotic liver disease (MASLD)], the percent of providers reporting "steatotic liver disease" as stigmatizing was low (14%).

CONCLUSIONS: Perception of NAFLD stigma varies among patients, providers, geographic locations and sub-specialties.

LAY SUMMARY-: Despite the increasing burden of NAFLD and the fact that over 38% of the world's adult population have NAFLD, disease awareness remains low. One potential issue that may affect awareness is the stigma associated with the terms, "non-alcoholic" and "fatty". In this global study, we found that the terms patients and physicians thought to cause stigma were different. These differences may negatively affect provider-patient communication hindering prompt intervention. These results can help inform education about this liver disease especially as the new nomenclature of Metabolic Dysfunction-Associated Steatotic Liver Disease (MASLD) is being implemented.

IMPACT AND IMPLICATIONS: Over the past decades, efforts have been underway to change the nomenclature of NAFLD to better align with its underlying pathogenetic pathways and remove any potential stigma associated with the name. Given the paucity of data related to stigma in NAFLD, we undertook this global comprehensive survey to assess stigma in NAFLD among patients and providers from around the world. We found there is a disconnect between physicians and patients related to stigma and related nomenclature. With this knowledge, educational programs can be developed to better target stigma in NAFLD among all stakeholders and to provide a better opportunity for the new nomenclature to address the issues of stigma.





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