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Background: NAFLD can be associated with disease burden and stigma to patients and providers. Aims: To understand the disease burden and stigma related to NAFLD. Methods: Members of the Global NASH Council created two surveys (68-item patient and 41- items provider survey) about experiences and attitudes toward NAFLD and related terms. Results: The surveys were completed by 895 NAFLD patients (19 countries) and 629 providers (64% GI/hepatologists, 23 countries). Of all patients, 64% ever disclosed having NAFLD to family/friends; the main term used was “fatty liver” (82%) while “metabolic disease” or “MAFLD” were rarely used (never by 88%). 35% of patients reported experiencing stigma or discrimination (at least sometimes) due to obesity/overweight and only 12% due to their liver disease of NAFLD. From the Liver Disease Burden (LDB) survey (35 items, 7 domains; range 1-4, higher scores indicate greater burden), the total mean burden score was the highest in USA (1.97 ±0.57) and lowest in Middle East and North Africa (MENA) region (1.74 ±0.53). The Stigma domain score was also the highest in the USA (2.51 ±0.71) and the lowest in MENA (1.84 ± 0.60). In multivariate analysis adjusted for country of enrollment, independent predictors of higher total LDB and Stigma scores were female sex, living outside urban areas, history of medical weight loss, having ≥2 chronic comorbidities, and having severe fibrosis or cirrhosis (p < 0.05). Regarding how various diagnostic terms were perceived by patients, there were no substantial differences between “NAFLD”, “fatty liver disease”, “NASH”, or “MAFLD” (Figure). In contrast, provider discomfort while taking care of patients with NAFLD was primarily related to the perceived patients’ lack of willpower for lifestyle changes and taking care of their diabetes (43-48%). Furthermore, 40% of providers believed that the word “fatty” in the name of the disease was stigmatizing for patients (similar across regions and specialties) while 35% believed that the term “non-alcoholic” was stigmatizing (more commonly in the MENA region and among GI/hepatologists). Finally, 45% of providers (49% GI/ hepatologists vs. 36% other specialties) believed that a name change may reduce the disease stigma. Conclusion: Drivers of stigma and disease burden varies between NAFLD patients, providers, and regions of the world. Female sex, non-urban living, comorbidities (cirrhosis, and medical weight loss) are predictors of greater disease burden and stigma scores in patients with NAFLD.





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American Association for the Study of Liver Diseases AASLD, The Liver Meeting, November 10-14, 2023, Boston, MA

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