Stigma in NAFLD and NASH: a global survey of patients and providers

Document Type

Conference Proceeding

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Publication Title

J Hepatol


Background and aims: Patients with fatty liver disease may experience stigmatization due to the disease or associated comorbidities. Aim: To understand stigma among NAFLD patients and providers. Method: Members of the Global NASH Council created two surveys about experiences and attitudes toward NAFLD and related terms: a 68-item patient and a 41-item provider survey. Results: The surveys were completed by 475 NAFLD patients [12 countries; 58% USA, 20% Middle East/North Africa (MENA), 20% East Asia (EA)] and 555 providers [63% GI/hepatologists,14 countries; 28% USA, 44% MENA, 25% EA]. Of all patients, 71% ever disclosed having NAFLD/NASH to family/friends; the most used words were “fatty liver” and “NAFLD or NASH” (35–54%), while “metabolic disease” or “MAFLD” were rarely used (never by 83–88%). There were 46% who reported experiencing stigma or discrimination (at least sometimes) due to obesity/overweight vs.17% due to NAFLD (Figure). The greatest social-emotional burden among NAFLD patients was feeling partially to blame for their liver disease (69% agree) and others believing that they do not eat properly (58% agree). Providers believed that lack of patient motivation (70%) and training in effective communication (62%) were the biggest obstacles to weight loss discussions. Furthermore, provider discomfort was related to perceived patients’ lack of willpower for lifestyle changes and taking care of their diabetes (45–49% providers; 13–17% USA vs. 64–70% MENA, 31–67% EA). Regarding how various diagnostic terms are perceived 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 (47%-57%), with some greater discomfort with FLD among U.S. patients (45% uncomfortable). Among providers, 42% (49% USA, 43% MENA, 32% EA) believed that the term “fatty” in the name is stigmatizing, while 38% believed that the term “nonalcoholic” is stigmatizing, more commonly in MENA (47%). Also, 38% of the providers reported the term “FLD” as being stigmatizing (47% USA, 40% MENA, 24% EA). Finally, 54% of the providers (GI/hep 58% vs. 42% other specialties; 46% USA, 59% MENA, 51% EA) believe that a name change may reduce stigma. Conclusion: Perception of NAFLD stigma varies according to patients, providers, geographic location and sub-specialty. NAFLD patients reported the term obesity to be more stigmatizing than NAFLD. [Figure presented]

PubMed ID

Not assigned.



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