Author information

¹Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; The Global NASH Council, Washington, DC, USA. Electronic address: zobair.younossi@cldq.org.

²The Global NASH Council, Washington, DC, USA; Division of Gastroenterology and Hepatology, Johns Hopkins University, Baltimore, MD, USA; Alfaisal University, King Faisal Specialist Hospital & Research Centre, Riyadh, Saudi Arabia.

³The Global NASH Council, Washington, DC, USA; Liver Disease Research Center, College of Medicine, King Saud University, Riyadh, Saudi Arabia.

⁴The Global NASH Council, Washington, DC, USA; Department of Gastroenterology, School of Medicine, Recep Tayyip Erdogan University, Rize, Turkey.

⁵The Global NASH Council, Washington, DC, USA; Department of Personality, Assessment, and Psychological Treatment, Faculty of Psychology, University of Seville, Seville, Spain.

⁶The Global NASH Council, Washington, DC, USA; UCM Digestive Diseases and ciberehd, Virgen del Rocío University Hospital; Instituto de Biomedicina de Sevilla (HUVR/CSIC/US), Department of Medicine, University of Seville, Seville, Spain.

⁷The Global NASH Council, Washington, DC, USA; Department of Gastroenterology, Xinhua Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China.

⁸The Global NASH Council, Washington, DC, USA; MAFLD Research Center, Department of Hepatology, the First Affiliated Hospital of Wenzhou Medical University, China.

⁹The Global NASH Council, Washington, DC, USA; Infectious Diseases and Hepatology Department, Faculty of Medicine, Helwan University, Cairo, Egypt.

¹⁰The Global NASH Council, Washington, DC, USA; Department of Hepatology, Beaujon Hospital; AP-HP, Université Paris Cité, Inserm UMR1149, Clichy, France.

¹¹The Global NASH Council, Washington, DC, USA; Hepatitis Research Center, Department of Internal Medicine and Graduate Institute of Clinical Medicine, National Taiwan University College of Medicine and Hospital, Taipei, Taiwan.

¹²The Global NASH Council, Washington, DC, USA; Department of Medicine and Therapeutics, Faculty of Medicine, The Chinese University of Hong Kong, Hong Kong, China.

¹³The Global NASH Council, Washington, DC, USA; School of Public Health, University of Haifa, Haifa, Israel.

¹⁴The Global NASH Council, Washington, DC, USA; Department of Medicine, Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN, USA.

¹⁵Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; The Global NASH Council, Washington, DC, USA.

¹⁶The Global NASH Council, Washington, DC, USA; Division of Gastroenterology, Chulalongkorn University, Bangkok, Thailand.

¹⁷The Global NASH Council, Washington, DC, USA; Department of Medicine, Clinical Trials Unit, Aga Khan University, Karachi, Pakistan.

¹⁸The Global NASH Council, Washington, DC, USA; Liver Center, Saga University Hospital, Saga, Japan.

¹⁹The Global NASH Council, Washington, DC, USA; Division of Gastroenterology, Department of Medicine, Kurume University School of Medicine, Kurume, Japan.

²⁰The Global NASH Council, Washington, DC, USA; Metabolic Liver Research Program, Department of Medicine, University Medical Center Mainz, Mainz, Germany.

²¹The Global NASH Council, Washington, DC, USA; Department of Hepatology, Post Graduate Institute of Medical Education and Research, Chandigarh, India.

²²The Global NASH Council, Washington, DC, USA; University of Birmingham, Birmingham, UK.

²³The Global NASH Council, Washington, DC, USA; Department of Gastroenterology and Hepatology, Antwerp University Hospital; InflaMed Centre of Excellence, Translational Sciences in Inflammation and Immunology, Laboratory of Experimental Medicine and Paediatrics (LEMP), Faculty of Medicine and Health Sciences, University of Antwerp, Antwerp, Belgium.

²⁴The Global NASH Council, Washington, DC, USA; Division of Hepatology, Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.

²⁵The Global NASH Council, Washington, DC, USA; Institute of Gastroenterology, University of Medical Sciences of Havana, Havana, Cuba.

²⁶The Global NASH Council, Washington, DC, USA; Department of Gastroenterology, Universita Degli Studi Di Padova, Padova, Italy.

²⁷The Global NASH Council, Washington, DC, USA; The Alfred, Melbourne, VIC, Australia.

²⁸The Global NASH Council, Washington, DC, USA; University of Malaya Medical Centre, Kuala Lumpur, Malaysia.

²⁹The Global NASH Council, Washington, DC, USA; Departamento de Gastroenterología, Facultad de Medicina, Pontificia Universidad Católica de Chile, Santiago, Chile.

³⁰The Global NASH Council, Washington, DC, USA; Hepatology and Liver Transplant Unit, Austral University Hospital, Buenos Aires, Argentina.

³¹The Global NASH Council, Washington, DC, USA; Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA.

³²The Global NASH Council, Washington, DC, USA; Division of Gastroenterology and Hepatology, University of Louisville School of Medicine; Trager Transplant Center and Jewish Hospital, Louisville, KY, USA.

³³The Global NASH Council, Washington, DC, USA; William Beaumont Hospital, Royal Oak, MI, USA.

³⁴The Global NASH Council, Washington, DC, USA; Central Virginia VA Health Care System (CVHCS); Virginia Commonwealth University (VCU), Richmond, VA, USA.

³⁵The Global NASH Council, Washington, DC, USA; Arizona Liver Health, Phoenix, AZ, USA.

³⁶The Global NASH Council, Washington, DC, USA; Division of Endocrinology, Diabetes and Metabolism, The University of Florida, Gainesville, FL, USA.

³⁷The Global NASH Council, Washington, DC, USA; University of California, San Diego, San Diego, CA, USA.

³⁸The Global NASH Council, Washington, DC, USA; Focus Medical Communications, East Hanover, NJ, USA.

³⁹The Global NASH Council, Washington, DC, USA; Fatty Liver Foundation, Boise, ID, USA.

⁴⁰The Global NASH Council, Washington, DC, USA; Kautz5 gUG, Köln, Germany.

⁴¹The Global NASH Council, Washington, DC, USA; College of Medicine, University of the Philippines, Manila, Philippines.

⁴²The Global NASH Council, Washington, DC, USA; Department of Hepatology and Research, South Denver Gastroenterology, PC, Englewood, CO, USA.

⁴³The Global NASH Council, Washington, DC, USA; Loco Medical General Institute; Saga University Faculty of Medicine, Saga, Japan.

⁴⁴The Global NASH Council, Washington, DC, USA; Department of Medicine, University of Valencia; Hospital General Universitario Valencia, Valencia, Spain.

⁴⁵The Global NASH Council, Washington, DC, USA; School of Medicine and Doctoral Program of Clinical and Experimental Medicine, College of Medicine and Center of Excellence for Metabolic Associated Fatty Liver Disease, National Sun Yat-Sen University; Hepatobiliary Division, Department of Internal Medicine, Kaohsiung Medical University Hospital, Kaohsiung, Taiwan.

⁴⁶Division of Cardiac Surgery, School of Medicine, Johns Hopkins University, Baltimore, MD, USA.

⁴⁷The Global NASH Council, Washington, DC, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.

⁴⁸Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; The Global NASH Council, Washington, DC, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.

⁴⁹Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Department of Hepatology, Post Graduate Institute of Medical Education and Research, Chandigarh, India; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.

⁵⁰Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Liver Disease, Department of Medicine, Inova Fairfax Medical Campus, Falls Church, VA, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA.

⁵¹The Global NASH Council, Washington, DC, USA; Aix Marseille Univ, Inserm, IRD, Sesstim, Sciences Economiques & Sociales De La Santé Et Traitement De L'information Médicale, Marseille, France.

⁵²The Global NASH Council, Washington, DC, USA; Barcelona Institute for Global Health (ISGlobal), Hospital Clínic, University of Barcelona, Barcelona, Spain.

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