The impact of stigma on quality of life and liver disease burden among patients with nonalcoholic fatty liver disease.
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Author
Younossi, Zobair MAlQahtani, Saleh A
Funuyet-Salas, Jesús
Romero-Gómez, Manuel
Yilmaz, Yusuf
Keklikkiran, Caglayan
Alswat, Khalid
Yu, Ming-Lung
Liu, Chun-Jen
Fan, Jian-Gao
Zheng, Ming-Hua
Burra, Patrizia
Francque, Sven M
Castera, Laurent
Schattenberg, Jörn M
Newsome, Philip N
Allen, Alina M
El-Kassas, Mohamed
Treeprasertsuk, Sombat
Hameed, Saeed
Wai-Sun Wong, Vincent
Zelber-Sagi, Shira
Takahashi, Hirokazu
Kawaguchi, Takumi
Castellanos Fernández, Marlen I
Duseja, Ajay
Arrese, Marco
Rinella, Mary
Singal, Ashwani K
Gordon, Stuart C
Fuchs, Michael
Eskridge, Wayne
Alkhouri, Naim
Cusi, Kenneth
Loomba, Rohit
Ranagan, Jane
Kautz, Achim
Ong, Janus P
Kugelmas, Marcelo
Eguchi, Yuichiro
Diago, Moises
Gerber, Lynn
Lam, Brian
Fornaresio, Lisa
Nader, Fatema
Spearman, C Wendy
Roberts, Stuart K
Chan, Wah-Kheong
Silva, Marcelo
Racila, Andrei
Golabi, Pegah
Ananchuensook, Prooksa
Henry, Linda
Stepanova, Maria
Carrieri, Patrizia
Lazarus, Jeffrey V
Publication date
2024-03-12Subject
Gastroenterology
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Show full item recordAbstract
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.Citation
Younossi ZM, AlQahtani SA, Funuyet-Salas J, Romero-Gómez M, Yilmaz Y, Keklikkiran C, Alswat K, Yu ML, Liu CJ, Fan JG, Zheng MH, Burra P, Francque SM, Castera L, Schattenberg JM, Newsome PN, Allen AM, El-Kassas M, Treeprasertsuk S, Hameed S, Wai-Sun Wong V, Zelber-Sagi S, Takahashi H, Kawaguchi T, Castellanos Fernández MI, Duseja A, Arrese M, Rinella M, Singal AK, Gordon SC, Fuchs M, Eskridge W, Alkhouri N, Cusi K, Loomba R, Ranagan J, Kautz A, Ong JP, Kugelmas M, Eguchi Y, Diago M, Gerber L, Lam B, Fornaresio L, Nader F, Spearman CW, Roberts SK, Chan WK, Silva M, Racila A, Golabi P, Ananchuensook P, Henry L, Stepanova M, Carrieri P, Lazarus JV; Global NASH Council. 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.Type
ArticleAdditional Links
https://www.ncbi.nlm.nih.gov/pmc/journals/3793/PMID
39022387Journal
JHEP ReportsPublisher
Elsevierae974a485f413a2113503eed53cd6c53
10.1016/j.jhepr.2024.101066