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; Global NASH Council

doi:10.1016/j.jhepr.2024.101066

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

JHEP Rep. 2024 Mar 12;6(7):101066. doi: 10.1016/j.jhepr.2024.101066. eCollection 2024 Jul.

Authors

Zobair M Younossi^{1

2}, Saleh A AlQahtani^{1

3

4}, Jesús Funuyet-Salas⁵, Manuel Romero-Gómez^{1

6}, Yusuf Yilmaz^{1

7}, Caglayan Keklikkiran^{1

7}, Khalid Alswat^{1

8}, Ming-Lung Yu^{1

9}, Chun-Jen Liu^{1

10}, Jian-Gao Fan^{1

11}, Ming-Hua Zheng^{1

12}, Patrizia Burra^{1

13}, Sven M Francque^{1

14}, Laurent Castera^{1

15}, Jörn M Schattenberg^{1

16}, Philip N Newsome^{1

17}, Alina M Allen^{1

18}, Mohamed El-Kassas^{1

19}, Sombat Treeprasertsuk^{1

20}, Saeed Hameed^{1

21}, Vincent Wai-Sun Wong^{1

22}, Shira Zelber-Sagi^{1

23}, Hirokazu Takahashi^{1

24}, Takumi Kawaguchi^{1

25}, Marlen I Castellanos Fernández^{1

26}, Ajay Duseja^{1

27}, Marco Arrese^{1

28}, Mary Rinella^{1

29}, Ashwani K Singal^{1

30}, Stuart C Gordon^{1

31}, Michael Fuchs^{1

32}, Wayne Eskridge^{1

33}, Naim Alkhouri^{1

34}, Kenneth Cusi^{1

35}, Rohit Loomba^{1

36}, Jane Ranagan³⁷, Achim Kautz^{1

38}, Janus P Ong^{1

39}, Marcelo Kugelmas^{1

40}, Yuichiro Eguchi^{1

41}, Moises Diago^{1

42}, Lynn Gerber^{1

2}, Brian Lam^{1

2}, Lisa Fornaresio⁴³, Fatema Nader^{1

2}, C Wendy Spearman^{1

44}, Stuart K Roberts^{1

45}, Wah-Kheong Chan^{1

46}, Marcelo Silva^{1

47}, Andrei Racila^{1

2}, Pegah Golabi^{1

2}, Prooksa Ananchuensook^{20

48}, Linda Henry^{1

2

49}, Maria Stepanova^{1

2

49}, Patrizia Carrieri^{1

50}, Jeffrey V Lazarus^{1

51

52

49}; Global NASH Council

Affiliations

¹ The Global NASH Council, Washington DC, USA.
² Beatty Liver and Obesity Research Program, Inova Health System, Falls Church, VA, USA.
³ Division of Gastroenterology and Hepatology, Johns Hopkins University, Baltimore, MD, USA.
⁴ Alfaisal University, King Faisal Specialist Hospital & Research Centre, Riyadh, KSA, Kingdom of Saudi Arabia.
⁵ Department of Personality, Assessment, and Psychological Treatment, Faculty of Psychology, University of Seville, Seville, Spain.
⁶ 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.
⁷ Department of Gastroenterology, School of Medicine, Recep Tayyip Erdoğan University, Rize, Türkiye.
⁸ Liver Disease Research Center, College of Medicine, King Saud University, Riyadh, Kingdom of Saudi Arabia.
⁹ 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.
¹⁰ Hepatitis Research Center, Department of Internal Medicine and Graduate Institute of Clinical Medicine, National Taiwan University College of Medicine and Hospital, Taipei, Taiwan.
¹¹ Department of Gastroenterology, Xinhua Hospital, Shanghai Jiaotong University School of Medicine, Shanghai, China.
¹² MAFLD Research Center, Department of Hepatology, the First Affiliated Hospital of Wenzhou Medical University, China.
¹³ Gastroenterology, Department of Surgery, Oncology and Gastroenterology, Padua University Hospital, Padua, Italy.
¹⁴ 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.
¹⁵ Department of Hepatology, Beaujon Hospital, AP-HP, Université Paris Cité, Inserm UMR1149, Clichy, France.
¹⁶ Metabolic Liver Research Program, I. Department of Medicine, University Medical Center Mainz, Mainz, Germany.
¹⁷ 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.
¹⁸ Division of Gastroenterology and Hepatology, Department of Medicine, Mayo Clinic, Rochester, MN, USA.
¹⁹ Endemic Medicine Department, Faculty of Medicine, Helwan University, Cairo, Egypt.
²⁰ Division of Gastroenterology, Department of Medicine, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand.
²¹ Department of Medicine, Clinical Trials Unit, Aga Khan University, Karachi, Pakistan.
²² Department of Medicine and Therapeutics, The Chinese University of Hong Kong, Hong Kong, China.
²³ School of Public Health, University of Haifa, Haifa, Israel.
²⁴ Liver Center, Saga University Hospital, Saga, Japan.
²⁵ Division of Gastroenterology, Department of Medicine, Kurume University School of Medicine, Kurume, Japan.
²⁶ Institute of Gastroenterology, University of Medical Sciences of Havana, Havana, Cuba.
²⁷ Department of Hepatology, Post Graduate Institute of Medical Education and Research, Chandigarh, India.
²⁸ Departamento de Gastroenterología, Facultad de Medicina, Pontificia Universidad Católica de Chile, Santiago, Chile.
²⁹ Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA.
³⁰ Division of Gastroenterology and Hepatology, University of Louisville School of Medicine, Trager Transplant Center and Jewish Hospital, Louisville, KY, USA.
³¹ Henry Ford Health and Wayne State University School of Medicine, Detroit, MI USA.
³² Central Virginia VA Health Care System (CVHCS), Virginia Commonwealth University (VCU), Richmond, VA, USA.
³³ Fatty Liver Foundation, Boise, ID, USA.
³⁴ Arizona Liver Health, Phoenix, AZ, USA.
³⁵ Division of Endocrinology, Diabetes and Metabolism, The University of Florida, Gainesville, FL, USA.
³⁶ University of California, San Diego, San Diego, CA, USA.
³⁷ Focus Medical Communications, East Hanover, NJ, USA.
³⁸ Kautz5 gUG, Köln, Germany.
³⁹ College of Medicine, University of the Philippines, Manila, Philippines.
⁴⁰ Department of Hepatology and Research, South Denver Gastroenterology, PC, Englewood, CO, USA.
⁴¹ Loco Medical General Institute, Saga University Faculty of Medicine, Saga, Japan.
⁴² Department of Medicine, University of Valencia, Hospital General Universitario Valencia, Valencia, Spain.
⁴³ Division of Cardiac Surgery, School of Medicine, Johns Hopkins University, Baltimore, MD, USA.
⁴⁴ Division of Hepatology, Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa.
⁴⁵ Gastroenterology Dept., The Alfred, Melbourne, VIC, Australia.
⁴⁶ University of Malaya Medical Centre, Kuala Lumpur, Malaysia.
⁴⁷ Hepatology Consultant, Austral University Hospital, Buenos Aires, Argentina.
⁴⁸ Academic Affair, Faculty of Medicine, Chulalongkorn University, Bangkok, Thailand.
⁴⁹ Center for Outcomes Research in Liver Diseases, Washington, DC, USA.
⁵⁰ Aix Marseille Univ, Inserm, IRD, SESSTIM, Sciences Economiques & Sociales de la Santé & Traitement de l'Information Médicale, ISSPAM, Marseille, France.
⁵¹ CUNY Graduate School of Public Health and Health Policy (CUNY SPH), New York, NY, USA.
⁵² Barcelona Institute for Global Health (ISGlobal), Hospital Clinic, University of Barcelona, Barcelona, Spain.

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.

Keywords: MASH; MASLD; NASH; SLD; metabolic liver disease; patient-reported outcomes.