作者
Zobair M. Younossi,Saleh A. Alqahtani,Khalid Alswat,Yusuf Yılmaz,Çağlayan Keklikkıran,Jesús Funuyet‐Salas,Manuel Romero‐Gómez,Jian‐Gao Fan,Ming‐Hua Zheng,Mohamed El‐Kassas,Laurent Castéra,Chun‐Jen Liu,Vincent Wai‐Sun Wong,Shira Zelber‐Sagi,Alina M. Allen,Brian Lam,Sombat Treeprasertsuk,Saeed Hameed,Hirokazu Takahashi,Takumi Kawaguchi,Jörn M. Schattenberg,Ajay Duseja,Philip N. Newsome,Sven Francque,C. Wendy Spearman,Marlen Castellanos,Patrizia Burra,Stuart K. Roberts,Wah‐Kheong Chan,Marco Arrese,Marcelo Silva,Mary E. Rinella,Ashwani K. Singal,Stuart C. Gordon,Michael Fuchs,Naim Alkhouri,Kenneth Cusi,Rohit Loomba,Jane Ranagan,Wayne Eskridge,Achim Kautz,Janus P. Ong,Marcelo Kugelmas,Yuichiro Eguchi,M. Diago,Ming‐Lung Yu,Lynn H. Gerber,Lisa Fornaresio,Fatema Nader,Linda Henry,Andrei Racila,Pegah Golabi,Maria Stepanova,Patrizia Carrieri,Jeffrey V. Lazarus
摘要
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.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.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%).The perception of NAFLD stigma varies among patients, providers, geographic locations and sub-specialties.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.