The impact of stigma on quality of life and liver disease burden among patients with nonalcoholic fatty liver disease.

Autor:	Younossi ZM; The Global NASH Council, Washington DC, USA.; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA., AlQahtani SA; 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., Funuyet-Salas J; Department of Personality, Assessment, and Psychological Treatment, Faculty of Psychology, University of Seville, Seville, Spain., Romero-Gómez M; 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., Yilmaz Y; The Global NASH Council, Washington DC, USA.; Department of Gastroenterology, School of Medicine, Recep Tayyip Erdoğan University, Rize, Türkiye., Keklikkiran C; The Global NASH Council, Washington DC, USA.; Department of Gastroenterology, School of Medicine, Recep Tayyip Erdoğan University, Rize, Türkiye., Alswat K; The Global NASH Council, Washington DC, USA.; Liver Disease Research Center, College of Medicine, King Saud University, Riyadh, Kingdom of Saudi Arabia., Yu ML; 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., Liu CJ; 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., Fan JG; The Global NASH Council, Washington DC, USA.; Department of Gastroenterology, Xinhua Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China., Zheng MH; The Global NASH Council, Washington DC, USA.; MAFLD Research Center, Department of Hepatology, the First Affiliated Hospital of Wenzhou Medical University, China., Burra P; The Global NASH Council, Washington DC, USA.; Gastroenterology, Department of Surgery, Oncology and Gastroenterology, Padua University Hospital, Padua, Italy., Francque SM; 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., Castera L; The Global NASH Council, Washington DC, USA.; Department of Hepatology, Beaujon Hospital, AP-HP, Université Paris Cité, Inserm UMR1149, Clichy, France., Schattenberg JM; The Global NASH Council, Washington DC, USA.; Metabolic Liver Research Program, I. Department of Medicine, University Medical Center Mainz, Mainz, Germany., Newsome PN; 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., Allen AM; The Global NASH Council, Washington DC, USA.; Division of Gastroenterology and Hepatology, Department of Medicine, Mayo Clinic, Rochester, MN, USA., El-Kassas M; The Global NASH Council, Washington DC, USA.; Endemic Medicine Department, Faculty of Medicine, Helwan University, Cairo, Egypt., Treeprasertsuk S; The Global NASH Council, Washington DC, USA.; Division of Gastroenterology, Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand., Hameed S; The Global NASH Council, Washington DC, USA.; Department of Medicine, Clinical Trials Unit, Aga Khan University, Karachi, Pakistan., Wai-Sun Wong V; The Global NASH Council, Washington DC, USA.; Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong, China., Zelber-Sagi S; The Global NASH Council, Washington DC, USA.; School of Public Health, University of Haifa, Haifa, Israel., Takahashi H; The Global NASH Council, Washington DC, USA.; Liver Center, Saga University Hospital, Saga, Japan., Kawaguchi T; The Global NASH Council, Washington DC, USA.; Division of Gastroenterology, Department of Medicine, Kurume University School of Medicine, Kurume, Japan., Castellanos Fernández MI; The Global NASH Council, Washington DC, USA.; Institute of Gastroenterology, University of Medical Sciences of Havana, Havana, Cuba., Duseja A; The Global NASH Council, Washington DC, USA.; Department of Hepatology, Post Graduate Institute of Medical Education and Research, Chandigarh, India., Arrese M; The Global NASH Council, Washington DC, USA.; Departamento de Gastroenterología, Facultad de Medicina, Pontificia Universidad Católica de Chile, Santiago, Chile., Rinella M; The Global NASH Council, Washington DC, USA.; Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA., Singal AK; 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., Gordon SC; The Global NASH Council, Washington DC, USA.; Henry Ford Health and Wayne State University School of Medicine, Detroit, MI USA., Fuchs M; The Global NASH Council, Washington DC, USA.; Central Virginia VA Health Care System (CVHCS), Virginia Commonwealth University (VCU), Richmond, VA, USA., Eskridge W; The Global NASH Council, Washington DC, USA.; Fatty Liver Foundation, Boise, ID, USA., Alkhouri N; The Global NASH Council, Washington DC, USA.; Arizona Liver Health, Phoenix, AZ, USA., Cusi K; The Global NASH Council, Washington DC, USA.; Division of Endocrinology, Diabetes and Metabolism, The University of Florida, Gainesville, FL, USA., Loomba R; The Global NASH Council, Washington DC, USA.; University of California, San Diego, San Diego, CA, USA., Ranagan J; Focus Medical Communications, East Hanover, NJ, USA., Kautz A; The Global NASH Council, Washington DC, USA.; Kautz5 gUG, Köln, Germany., Ong JP; The Global NASH Council, Washington DC, USA.; College of Medicine, University of the Philippines, Manila, Philippines., Kugelmas M; The Global NASH Council, Washington DC, USA.; Department of Hepatology and Research, South Denver Gastroenterology, PC, Englewood, CO, USA., Eguchi Y; The Global NASH Council, Washington DC, USA.; Loco Medical General Institute, Saga University Faculty of Medicine, Saga, Japan., Diago M; The Global NASH Council, Washington DC, USA.; Department of Medicine, University of Valencia, Hospital General Universitario Valencia, Valencia, Spain., Gerber L; The Global NASH Council, Washington DC, USA.; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA., Lam B; The Global NASH Council, Washington DC, USA.; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA., Fornaresio L; Division of Cardiac Surgery, School of Medicine, Johns Hopkins University, Baltimore, MD, USA., Nader F; The Global NASH Council, Washington DC, USA.; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA., Spearman CW; 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., Roberts SK; The Global NASH Council, Washington DC, USA.; Gastroenterology Dept., The Alfred, Melbourne, VIC, Australia., Chan WK; The Global NASH Council, Washington DC, USA.; University of Malaya Medical Centre, Kuala Lumpur, Malaysia., Silva M; The Global NASH Council, Washington DC, USA.; Hepatology Consultant, Austral University Hospital, Buenos Aires, Argentina., Racila A; The Global NASH Council, Washington DC, USA.; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA., Golabi P; The Global NASH Council, Washington DC, USA.; Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA., Ananchuensook P; Division of Gastroenterology, Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand.; Academic Affair, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand., Henry L; 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., Stepanova M; 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., Carrieri P; 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., Lazarus JV; 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.
Jazyk:	angličtina
Zdroj:	JHEP reports : innovation in hepatology [JHEP Rep] 2024 Mar 12; Vol. 6 (7), pp. 101066. Date of Electronic Publication: 2024 Mar 12 (Print Publication: 2024).
DOI:	10.1016/j.jhepr.2024.101066
Abstrakt:	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. Competing Interests: ZMY: research funding or consultation fees from AstraZeneca, Boehringer Ingelheim, Bristol Myers Squibb, Cymabay, GlaxoSmithKline, Intercept, Novo Nordisk, Siemens, Madrigal, Merck; YY: consulting/advisory board for Novo Nordisk, Cymabay, and Zydus. VWSW: served as a consultant or advisory board member for AbbVie, Boehringer Ingelheim, Echosens, Gilead Sciences, Intercept, Inventiva, Novo Nordisk, Pfizer, Sagimet Biosciences, TARGET PharmaSolutions, Visirna, speaker for Abbott, AbbVie, Gilead Sciences, Novo Nordisk, Unilab, received a research grant from Gilead Sciences, co-founder of Illuminatio Medical Technology Limited; AMA: grant funding from NIH, Novo Nordisk, Target Pharma, consulting/advisory board for Novo Nordisk. JMS: consultant for Astra Zeneca, Apollo Endosurgery, Bayer, Boehringer Ingelheim, BMS, Gilead Sciences, GSK, Intercept Pharmaceuticals, Ipsen, Inventiva Pharma, Madrigal, MSD, Northsea Therapeutics, Novartis, Novo Nordisk, Pfizer, Roche, Sanofi, Siemens Healthineers, receives research funding from Gilead Sciences, Boehringer Ingelheim, Siemens Healthcare GmbH, has stock options of AGED diagnostics, Hepta Bio, received speaker honorarium from Boehringer Ingelheim, Echosens, MedPublico GmbH, Novo Nordisk, Madrigal Pharmaceuticals, Histoindex, MedPublico GmbH. CWS: speaker bureau fees from Gilead Sciences, Abbott; RL: receives funding support from NCATS, NIDDK, NHLBI, serves as a consultant to Aardvark Therapeutics, Altimmune, Amgen, Arrowhead Pharmaceuticals, AstraZeneca, Eli Lilly, Gilead, Glympse bio, Inipharma, Intercept, Inventiva, Ionis, Janssen Inc., Madrigal, Novo Nordisk, Merck, Pfizer, Sagimet, Theratechnologies, 89 bio, Takeda, Terns Pharmaceuticals and Viking Therapeutics. In addition, his institution received research grants from Arrowhead Pharmaceuticals, Astrazeneca, Boehringer-Ingelheim, Bristol-Myers Squibb, Eli Lilly, Galectin Therapeutics, Gilead, Intercept, Hanmi, Intercept, Inventiva, Ionis, Janssen, Madrigal Pharmaceuticals, Merck, Novo Nordisk, Pfizer, Sonic Incytes, Terns Pharmaceuticals, co-founder of LipoNexus Inc. PC: received research grants by MSD and Intercept. JVL reports grants from AbbVie, MSD, Gilead Sciences and Roche Diagnostics to his institution and speaker fees from Echosens, Gilead Sciences, and Novo Nordisk. SF: holds a senior clinical investigator fellowship from the Research Foundation Flanders (FWO) (1802154N). His institution has received grants from Astellas, Falk Pharma, Genfit, Gilead Sciences, GlympsBio, Janssens Pharmaceutica, Inventiva, Merck Sharp & Dome, Pfizer, Roche. He has acted as consultant for Abbvie, Actelion, Aelin Therapeutics, AgomAb, Aligos Therapeutics, Allergan, Alnylam, Astellas, Astra Zeneca, Bayer, Boehringer Ingelheim, Bristoll-Meyers Squibb, CSL Behring, Coherus, Echosens, Dr. Falk Pharma, Eisai, Enyo, Galapagos, Galmed, Genetech, Genfit, Genflow Biosciences, Gilead Sciences, Intercept, Inventiva, Janssens Pharmaceutica, PRO.MED.CS Praha, Julius Clinical, Madrigal, Medimmune, Merck Sharp & Dome, Mursla Bio, NGM Bio, Novartis, Novo Nordisk, Promethera, Roche, Siemens Healthineers. SF has been lecturer for Abbvie, Allergan, Bayer, Eisai, Genfit, Gilead Sciences, Janssens Cilag, Intercept, Inventiva, Merck Sharp & Dome, Novo Nordisk, Promethera, Siemens. AKS: Reports personal fees from Medscape Gastroenterology, Chronic Liver Disease Foundation, Medical Speakers Network, Up-to-Date; non-financial support from American Association for Study of Liver Diseases (AASLD), American College of Gastroenterology, and American Porphyria Foundation; grants from American College of Gastroenterology and National Institute of Health (NIAAA and NIDDK). Dr. Singal is a consultant on the SBIR grant for Pleiogenix pharmaceuticals and is DSMB member for phase 2-b trial of DUR-928 in alcoholic hepatitis for Durect Pharmaceuticals. In addition, apart from a steering committee member of the portal hypertension SIG and chair of the alcohol-associated liver disease SIG (2020-2022) of the AASLD, Dr. Singal currently is vice chair of the liver and biliary section of the AGA Council. None of these disclosures conflict with this activity. LC reports lecture fees from Echosens, Gilead, Inventiva and Novo Nordisk, consultancy fees from Echosens, Novo Nordisk, Madrigal, MSD, Pfizer, Sagimet, and Siemens. NA: Grant/research support from 89Bio, AbbVie/Allergan, Akero, Better Therapeutics, Boehringer Ingelheim, Bristol-Myers Squibb, Corcept, DSM, Galectin, Genentech, Genfit, Gilead, Hepagene, Healio, Intercept, Inventiva, Ionis, Madrigal, Merck, NGM, Noom, NorthSea, Novo Nordisk, Perspectum, Pfizer, Poxel, Viking, and Zydus; speaker’s fees from AbbVie/Allergan, Alexion, Echosens, Eisai, Exelixis, Gilead, Intercept, Perspectum, Salix, and Theratechnologies; Consultant for AbbVie/Allergan, Echosens, Fibronostics, Gilead, Intercept, Madrigal, Novo Nordisk, Perspectum, Pfizer, and Zydus. MEK: investigator/speaker/advisory board member: AstraZeneca, Roche, MSD, AbbVie, Eva, Mash Premier, Takeda, Organon, AUG, Inspire, HSO, Gilead, Janssen, Intercept, Rameda, Ipsen, Onxeo, MinaPharm, Pharco, Zeta, Alfa Cure, Bayer, Oncoustics, PDC, and Spimaco. JMS: Consultant - Astra Zeneca, Apollo Endosurgery, Bayer, Boehringer Ingelheim, Gilead Sciences, GSK, Intercept Pharmaceuticals, Ipsen, Inventiva Pharma, Madrigal, MSD, Northsea Therapeutics, Novartis, Novo Nordisk, Pfizer, Roche, Sanofi, Siemens Healthineers. Research Funding: Gilead Sciences, Boehringer Ingelheim, Siemens Healthcare GmbH. Stock Options: AGED diagnostics, Hepta Bio. Speaker Honorarium: Boehringer Ingelheim, Echosens, MedPublico GmbH, Novo Nordisk, Madrigal Pharmaceuticals, Histoindex, MedPublico GmbH. MK: Research grants: Madrigal + consulting and speaking, Akero, Cymabay, Inventiva, Intercept + consulting and speaking.Gilead + consulting and speaking, Viking, Bio89, Ipsen + consulting, Genfit, Bausch + consulting, Ionis, North Sea,Celgene,Genentech, High Tide, Tobira-Allergan, Abbvie + consulting and speaking, NOT research. MLY: Research support (grant) from Abbvie, BMS, Gilead, Merck and Roche diagnostics; Consultant of Abbvie, BMS, Gilead, Roche and Roche diagnostics; Speaker of Abbvie, BMS, Eisai, Gilead, Roche and Roche diagnostics. S.Z-S has given a onetime presentation for and received support for attending meetings and/or travel from AbbVie, and a onetime consultation for Siemens, outside of the submitted work. PNN discloses the following financial relationship(s) on behalf of the University of Birmingham with a commercial interest: Grant/research support from Boehringer Ingelheim and Novo Nordisk; Consulting fees from Astra Zeneca, Boehringer Ingelheim, BMS, Gilead, GSK, Intercept, Madrigal, Novo Nordisk, Pfizer, Poxel Pharmaceuticals and Sun Pharma. Other coauthors report no conflicts of interest related to this study. Please refer to the accompanying ICMJE disclosure forms for further details. (© 2024 The Authors.)
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