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The Impact of Stigma on Quality of Life and Liver Disease Burden Among Patients with Nonalcoholic Fatty Liver Disease

2024; Elsevier BV; Volume: 6; Issue: 7 Linguagem: Inglês

10.1016/j.jhepr.2024.101066

2589-5559

Zobair M. Younossi, Saleh A. Alqahtani, Jesús Funuyet‐Salas, Manuel Romero‐Gómez, Yusuf Yılmaz, Çağlayan Keklikkıran, Khalid Alswat, Ming‐Lung Yu, Chun‐Jen Liu, Jian‐Gao Fan, Ming‐Hua Zheng, Patrizia Burra, Sven Francque, Laurent Castéra, Jörn M. Schattenberg, Philip N. Newsome, Alina M. Allen, Mohamed El‐Kassas, Sombat Treeprasertsuk, Saeed Hameed, Vincent Wai‐Sun Wong, Shira Zelber‐Sagi, Kazuhiro Takahashi, Takumi Kawaguchi, Marlen Castellanos, Ajay Duseja, Marco Arrese, Mary E. 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, M. Diago, Lynn H. 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,

Bariatric Surgery and Outcomes

Background & AimsPatients with nonalcoholic fatty liver disease (NAFLD)/metabolic dysfunction-associated steatotic liver disease (MASLD) face 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.MethodsMembers of the Global NASH Council created a survey about disease burden in NAFLD. Participants completed the 35-item questionnaire to assess Liver Disease Burden (LDB) (7 domains), 36-item CLDQ-NASH (6 domains) HRQL instruments, and reported their experience with stigmatization and discrimination.ResultsA total 2,117 NAFLD patients from 24 countries completed the LDB survey (48% MENA, 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.ConclusionsStigmatization of NAFLD patients, 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 NAFLD patients.Impact and implicationsPatients 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 NAFLD patients, whether it is caused by obesity or the liver disease of NAFLD, 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 the disease 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.