JHEP Reports (Jul 2024)
The impact of stigma on quality of life and liver disease burden among patients with nonalcoholic fatty liver disease
- Zobair M. Younossi,
- Saleh A. AlQahtani,
- Jesús Funuyet-Salas,
- Manuel Romero-Gómez,
- Yusuf Yilmaz,
- Caglayan Keklikkiran,
- Khalid Alswat,
- Ming-Lung Yu,
- Chun-Jen Liu,
- Jian-Gao Fan,
- Ming-Hua Zheng,
- Patrizia Burra,
- Sven M. Francque,
- Laurent Castera,
- Jörn M. Schattenberg,
- Philip N. Newsome,
- Alina M. Allen,
- Mohamed El-Kassas,
- Sombat Treeprasertsuk,
- Saeed Hameed,
- Vincent Wai-Sun Wong,
- Shira Zelber-Sagi,
- Hirokazu Takahashi,
- Takumi Kawaguchi,
- Marlen I. Castellanos Fernández,
- Ajay Duseja,
- Marco Arrese,
- Mary Rinella,
- Ashwani K. Singal,
- Stuart C. Gordon,
- Michael Fuchs,
- Wayne Eskridge,
- Naim Alkhouri,
- Kenneth Cusi,
- Rohit Loomba,
- Jane Ranagan,
- Achim Kautz,
- Janus P. Ong,
- Marcelo Kugelmas,
- Yuichiro Eguchi,
- Moises Diago,
- Lynn Gerber,
- Brian Lam,
- Lisa Fornaresio,
- Fatema Nader,
- C. Wendy Spearman,
- Stuart K. Roberts,
- Wah-Kheong Chan,
- Marcelo Silva,
- Andrei Racila,
- Pegah Golabi,
- Prooksa Ananchuensook,
- Linda Henry,
- Maria Stepanova,
- Patrizia Carrieri,
- Jeffrey V. Lazarus
Affiliations
- Zobair M. Younossi
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Corresponding author. Address: Global NASH Council, Center for Outcomes Research in Liver Diseases, 2411 I. St NW, Washington DC, 20037, USA
- Saleh A. AlQahtani
- The 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, KSA, Kingdom of Saudi Arabia
- Jesús Funuyet-Salas
- Department of Personality, Assessment, and Psychological Treatment, Faculty of Psychology, University of Seville, Seville, Spain
- Manuel Romero-Gómez
- The 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
- Yusuf Yilmaz
- The Global NASH Council, Washington DC, USA; Department of Gastroenterology, School of Medicine, Recep Tayyip Erdoğan University, Rize, Türkiye
- Caglayan Keklikkiran
- The Global NASH Council, Washington DC, USA; Department of Gastroenterology, School of Medicine, Recep Tayyip Erdoğan University, Rize, Türkiye
- Khalid Alswat
- The Global NASH Council, Washington DC, USA; Liver Disease Research Center, College of Medicine, King Saud University, Riyadh, Kingdom of Saudi Arabia
- Ming-Lung Yu
- The 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, Taiwan
- Chun-Jen Liu
- The 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
- Jian-Gao Fan
- The Global NASH Council, Washington DC, USA; Department of Gastroenterology, Xinhua Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China
- Ming-Hua Zheng
- The Global NASH Council, Washington DC, USA; MAFLD Research Center, Department of Hepatology, the First Affiliated Hospital of Wenzhou Medical University, China
- Patrizia Burra
- The Global NASH Council, Washington DC, USA; Gastroenterology, Department of Surgery, Oncology and Gastroenterology, Padua University Hospital, Padua, Italy
- Sven M. Francque
- The 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
- Laurent Castera
- The Global NASH Council, Washington DC, USA; Department of Hepatology, Beaujon Hospital, AP-HP, Université Paris Cité, Inserm UMR1149, Clichy, France
- Jörn M. Schattenberg
- The Global NASH Council, Washington DC, USA; Metabolic Liver Research Program, I. Department of Medicine, University Medical Center Mainz, Mainz, Germany
- Philip N. Newsome
- The Global NASH Council, Washington DC, USA; National Institute for Health Research, Biomedical Research Centre at University Hospitals Birmingham NHS Foundation Trust and the University of Birmingham, Centre for Liver & Gastrointestinal Research, Institute of Immunology and Immunotherapy, University of Birmingham, UK
- Alina M. Allen
- The Global NASH Council, Washington DC, USA; Division of Gastroenterology and Hepatology, Department of Medicine, Mayo Clinic, Rochester, MN, USA
- Mohamed El-Kassas
- The Global NASH Council, Washington DC, USA; Endemic Medicine Department, Faculty of Medicine, Helwan University, Cairo, Egypt
- Sombat Treeprasertsuk
- The Global NASH Council, Washington DC, USA; Division of Gastroenterology, Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand
- Saeed Hameed
- The Global NASH Council, Washington DC, USA; Department of Medicine, Clinical Trials Unit, Aga Khan University, Karachi, Pakistan
- Vincent Wai-Sun Wong
- The Global NASH Council, Washington DC, USA; Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong, China
- Shira Zelber-Sagi
- The Global NASH Council, Washington DC, USA; School of Public Health, University of Haifa, Haifa, Israel
- Hirokazu Takahashi
- The Global NASH Council, Washington DC, USA; Liver Center, Saga University Hospital, Saga, Japan
- Takumi Kawaguchi
- The Global NASH Council, Washington DC, USA; Division of Gastroenterology, Department of Medicine, Kurume University School of Medicine, Kurume, Japan
- Marlen I. Castellanos Fernández
- The Global NASH Council, Washington DC, USA; Institute of Gastroenterology, University of Medical Sciences of Havana, Havana, Cuba
- Ajay Duseja
- The Global NASH Council, Washington DC, USA; Department of Hepatology, Post Graduate Institute of Medical Education and Research, Chandigarh, India
- Marco Arrese
- The Global NASH Council, Washington DC, USA; Departamento de Gastroenterología, Facultad de Medicina, Pontificia Universidad Católica de Chile, Santiago, Chile
- Mary Rinella
- The Global NASH Council, Washington DC, USA; Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA
- Ashwani K. Singal
- The 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
- Stuart C. Gordon
- The Global NASH Council, Washington DC, USA; Henry Ford Health and Wayne State University School of Medicine, Detroit, MI USA
- Michael Fuchs
- The Global NASH Council, Washington DC, USA; Central Virginia VA Health Care System (CVHCS), Virginia Commonwealth University (VCU), Richmond, VA, USA
- Wayne Eskridge
- The Global NASH Council, Washington DC, USA; Fatty Liver Foundation, Boise, ID, USA
- Naim Alkhouri
- The Global NASH Council, Washington DC, USA; Arizona Liver Health, Phoenix, AZ, USA
- Kenneth Cusi
- The Global NASH Council, Washington DC, USA; Division of Endocrinology, Diabetes and Metabolism, The University of Florida, Gainesville, FL, USA
- Rohit Loomba
- The Global NASH Council, Washington DC, USA; University of California, San Diego, San Diego, CA, USA
- Jane Ranagan
- Focus Medical Communications, East Hanover, NJ, USA
- Achim Kautz
- The Global NASH Council, Washington DC, USA; Kautz5 gUG, Köln, Germany
- Janus P. Ong
- The Global NASH Council, Washington DC, USA; College of Medicine, University of the Philippines, Manila, Philippines
- Marcelo Kugelmas
- The Global NASH Council, Washington DC, USA; Department of Hepatology and Research, South Denver Gastroenterology, PC, Englewood, CO, USA
- Yuichiro Eguchi
- The Global NASH Council, Washington DC, USA; Loco Medical General Institute, Saga University Faculty of Medicine, Saga, Japan
- Moises Diago
- The Global NASH Council, Washington DC, USA; Department of Medicine, University of Valencia, Hospital General Universitario Valencia, Valencia, Spain
- Lynn Gerber
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA
- Brian Lam
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA
- Lisa Fornaresio
- Division of Cardiac Surgery, School of Medicine, Johns Hopkins University, Baltimore, MD, USA
- Fatema Nader
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA
- C. Wendy Spearman
- The Global NASH Council, Washington DC, USA; Division of Hepatology, Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
- Stuart K. Roberts
- The Global NASH Council, Washington DC, USA; Gastroenterology Dept., The Alfred, Melbourne, VIC, Australia
- Wah-Kheong Chan
- The Global NASH Council, Washington DC, USA; University of Malaya Medical Centre, Kuala Lumpur, Malaysia
- Marcelo Silva
- The Global NASH Council, Washington DC, USA; Hepatology Consultant, Austral University Hospital, Buenos Aires, Argentina
- Andrei Racila
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA
- Pegah Golabi
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA
- Prooksa Ananchuensook
- Division of Gastroenterology, Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand; Academic Affair, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand
- Linda Henry
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA
- Maria Stepanova
- The Global NASH Council, Washington DC, USA; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA; Center for Outcomes Research in Liver Diseases, Washington, DC, USA
- Patrizia Carrieri
- The Global NASH Council, Washington DC, USA; Aix Marseille Univ, Inserm, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l’Information Médicale, ISSPAM, Marseille, France
- Jeffrey V. Lazarus
- The Global NASH Council, Washington DC, USA; CUNY Graduate School of Public Health and Health Policy (CUNY SPH), New York, NY, USA; Barcelona Institute for Global Health (ISGlobal), Hospital Clinic, University of Barcelona, Barcelona, Spain; Center for Outcomes Research in Liver Diseases, Washington, DC, USA
- Journal volume & issue
-
Vol. 6,
no. 7
p. 101066
Abstract
Background & Aims: Patients with nonalcoholic fatty liver disease (NAFLD)/metabolic dysfunction-associated steatotic liver disease (MASLD) face a multifaceted disease burden which includes impaired health-related quality of life (HRQL) and potential stigmatization. We aimed to assess the burden of liver disease in patients with NAFLD and the relationship between experience of stigma and HRQL. Methods: Members of the Global NASH Council created a survey about disease burden in NAFLD. Participants completed a 35-item questionnaire to assess liver disease burden (LDB) (seven domains), the 36-item CLDQ-NASH (six domains) survey to assess HRQL and reported their experience with stigmatization and discrimination. Results: A total of 2,117 patients with NAFLD from 24 countries completed the LDB survey (48% Middle East and North Africa, 18% Europe, 16% USA, 18% Asia) and 778 competed CLDQ-NASH. Of the study group, 9% reported stigma due to NAFLD and 26% due to obesity. Participants who reported stigmatization due to NAFLD had substantially lower CLDQ-NASH scores (all p <0.0001). In multivariate analyses, experience with stigmatization or discrimination due to NAFLD was the strongest independent predictor of lower HRQL scores (beta from -5% to -8% of score range size, p <0.02). Experience with stigmatization due to obesity was associated with lower Activity, Emotional Health, Fatigue, and Worry domain scores, and being uncomfortable with the term “fatty liver disease” with lower Emotional Health scores (all p <0.05). In addition to stigma, the greatest disease burden as assessed by LDB was related to patients’ self-blame for their liver disease. Conclusions: Stigmatization of patients with NAFLD, whether it is caused by obesity or NAFLD, is strongly and independently associated with a substantial impairment of their HRQL. Self-blame is an important part of disease burden among patients with NAFLD. Impact and implications: Patients with nonalcoholic fatty liver disease (NAFLD), recently renamed metabolic dysfunction-associated steatotic liver disease (MASLD), may experience impaired health-related quality of life and stigmatization. Using a specifically designed survey, we found that stigmatization of patients with NAFLD, whether it is caused by obesity or the liver disease per se, is strongly and independently associated with a substantial impairment of their quality of life. Physicians treating patients with NAFLD should be aware of the profound implications of stigma, the high prevalence of self-blame in the context of this disease burden, and that providers’ perception may not adequately reflect patients’ perspective and experience with the disease.
