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

Younossi, Zobair M. and Alqahtani, Saleh A. and Alswat, Khalid and Yilmaz, Yusuf and Keklikkiran, Caglayan and Funuyet-Salas, Jesús and Romero-Gómez, Manuel and Fan, Jian-Gao and Zheng, Ming-Hua and El-Kassas, Mohamed and Castera, Laurent and Liu, Chun-Jen and Wai-Sun Wong, Vincent and Zelber-Sagi, Shira and Allen, Alina M. and Lam, Brian and Treeprasertsuk, Sombat and Hameed, Saeed and Takahashi, Hirokazu and Kawaguchi, Takumi and Schattenberg, Jörn M. and Duseja, Ajay and Newsome, Phil N. and Francque, Sven and Spearman, C. Wendy and Castellanos Fernández, Marlen I. and Burra, Patrizia and Roberts, Stuart K. and Chan, Wah Kheong and Arrese, Marco and Silva, Marcelo and Rinella, Mary and Singal, Ashwani K. and Gordon, Stuart and Fuchs, Michael and Alkhouri, Naim and Cusi, Kenneth and Loomba, Rohit and Ranagan, Jane and Eskridge, Wayne and Kautz, Achim and Ong, Janus P. and Kugelmas, Marcelo and Eguchi, Yuichiro and Diago, Moises and Yu, Ming-Lung and Gerber, Lynn and Fornaresio, Lisa and Nader, Fatema and Henry, Linda and Racila, Andrei and Golabi, Pegah and Stepanova, Maria and Carrieri, Patrizia and Lazarus, Jeffrey V. (2024) Global survey of stigma among physicians and patients with nonalcoholic fatty liver disease. Journal of Hepatology, 80 (3). 419 – 430. ISSN 0168-8278, DOI https://doi.org/10.1016/j.jhep.2023.11.004.

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Abstract

Background & 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 patients with nonalcoholic fatty liver disease (NAFLD)/nonalcoholic steatohepatitis (NASH) and healthcare providers. Methods: Members of the Global NASH Council created two surveys about experiences/attitudes toward NAFLD and related diagnostic terms: a 68-item patient and a 41-item provider survey. Results: Surveys were completed by 1,976 patients with NAFLD across 23 countries (51 Middle East/North Africa MENA, 19% Europe, 17% USA, 8% Southeast Asia, 5% South Asia) and 825 healthcare providers (67% gastroenterologists/hepatologists) across 25 countries (39% MENA, 28% Southeast Asia, 22% USA, 6% South Asia, 3% Europe). Of all patients, 48% ever disclosed having NAFLD/NASH to family/friends; the most commonly used term was “fatty liver” (88% at least sometimes); “metabolic disease” or “MAFLD” were rarely used (never by >84%). Regarding various perceptions of diagnostic terms 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 slightly greater discomfort with “FLD” among the US and South Asian patients (47-52% uncomfortable). Although 26% of patients reported stigma related to overweight/obesity, only 8% reported a 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 (gastroenterologists/hepatologists 45% vs. 37% other specialties, p = 0.03) believed that the name change to metabolic dysfunction-associated steatotic liver disease (or MASLD) might reduce stigma. Regarding the new nomenclature, the percentage of providers reporting “steatotic liver disease” as stigmatizing was low (14%). Conclusions: The perception of NAFLD stigma varies among patients, providers, geographic locations and sub-specialties. Impact and implications: Over the past decades, efforts have been made to change the nomenclature of nonalcoholic fatty liver disease (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. © 2023 European Association for the Study of the Liver

Item Type: Article
Funders: Center for Outcomes Research in Liver Diseases
Uncontrolled Keywords: Communication; Discrimination; Fatty liver; MASH; MASLD; Metabolic; Patient-reported outcomes; SLD
Subjects: R Medicine > R Medicine (General)
Divisions: Faculty of Medicine > Medicine Department
Depositing User: Ms. Juhaida Abd Rahim
Date Deposited: 18 Jun 2024 02:24
Last Modified: 18 Jun 2024 02:24
URI: http://eprints.um.edu.my/id/eprint/44861

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