Stigma in NAFLD and NASH: a global survey of patients and providers
Recommended Citation
Younossi Z, Yilmaz Y, Fan J, Wong V, El Kassas M, Zelber-Sagi S, Allen A, Rinella M, Singal A, Gordon SC, Fuchs M, Eskridge W, Alkhouri N, Alswat K, Takahashi H, Kawaguchi T, Ranagan J, Zheng M, Duseja AK, Burra P, Patrizia C, Arrese M, Kautz A, Ong J, Castera L, Francque S, Kugelmas M, Eguchi Y, Treeprasertsuk S, Fernandez MI, Gomez MR, Newsome PN. Stigma in NAFLD and NASH: a global survey of patients and providers. J Hepatol 2023; 78:627-628.
Document Type
Conference Proceeding
Publication Date
6-1-2023
Publication Title
J Hepatol
Abstract
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.
Volume
78
First Page
627
Last Page
628
