1. Global survey of stigma among physicians and patients with nonalcoholic fatty liver disease
- Author
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Younossi, Zobair M, AlQahtani, Saleh A, Alswat, Khalid, Yilmaz, Yusuf, Keklikkiran, Caglayan, Funuyet-Salas, Jesús, Romero-Gómez, Manuel, Fan, Jian-Gao, Zheng, Ming-Hua, El-Kassas, Mohamed, Castera, Laurent, Liu, Chun-Jen, Wong, Vincent Wai-Sun, Zelber-Sagi, Shira, Allen, Alina M, Lam, Brian, Treeprasertsuk, Sombat, Hameed, Saeed, Takahashi, Hirokazu, Kawaguchi, Takumi, Schattenberg, Jörn M, Duseja, Ajay, Newsome, Phil, Francque, Sven, Spearman, C Wendy, Fernández, Marlen I Castellanos, Burra, Patrizia, Roberts, Stuart K, Chan, Wah-Kheong, Arrese, Marco, Silva, Marcelo, Rinella, Mary, Singal, Ashwani K, Gordon, Stuart, Fuchs, Michael, Alkhouri, Naim, Cusi, Kenneth, Loomba, Rohit, Ranagan, Jane, Eskridge, Wayne, Kautz, Achim, Ong, Janus P, Kugelmas, Marcelo, Eguchi, Yuichiro, Diago, Moises, Yu, Ming-Lung, Gerber, Lynn, Fornaresio, Lisa, Nader, Fatema, Henry, Linda, Racila, Andrei, Golabi, Pegah, Stepanova, Maria, Carrieri, Patrizia, Lazarus, Jeffrey V, and Council, the Global NASH
- Subjects
Biomedical and Clinical Sciences ,Clinical Sciences ,Liver Disease ,Digestive Diseases ,Chronic Liver Disease and Cirrhosis ,Hepatitis ,Health Services ,Clinical Research ,Prevention ,Good Health and Well Being ,Global NASH Council ,MASH ,MASLD ,SLD ,communication ,discrimination ,fatty liver ,metabolic ,patient-reported outcomes ,Public Health and Health Services ,Gastroenterology & Hepatology ,Clinical sciences - Abstract
Background & aimsPatients 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.MethodsMembers 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.ResultsSurveys 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%).ConclusionsThe perception of NAFLD stigma varies among patients, providers, geographic locations and sub-specialties.Impact and implicationsOver 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.
- Published
- 2023