The impact of stigma on quality of life and liver disease burden among patients with nonalcoholic fatty liver disease.
Journal
JHEP reports : innovation in hepatology
Journal Volume
6
Journal Issue
7
Start Page
101066
ISSN
2589-5559
Date Issued
2024-07
Author(s)
Younossi, Zobair M
AlQahtani, Saleh A
Funuyet-Salas, Jesús
Romero-Gómez, Manuel
Yilmaz, Yusuf
Keklikkiran, Caglayan
Alswat, Khalid
Yu, Ming-Lung
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 et al.
Abstract
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.
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.
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 <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, 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 0.05). In addition to stigma, the greatest disease burden as assessed by LDB was related to patients' self-blame for their liver disease.
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.
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 , 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.
Subjects
MASH
MASLD
NASH
SLD
metabolic liver disease
patient-reported outcomes
Type
journal article