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 , Jeffrey V. Lazarus
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We aimed to assess the burden of liver disease in patients with NAFLD and the relationship between experience of stigma and HRQL.</p></div><div><h3>Methods</h3><p>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.</p></div><div><h3>Results</h3><p>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 <em>p</em> <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, <em>p <</em>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 <em>p <</em>0.05). In addition to stigma, the greatest disease burden as assessed by LDB was related to patients’ self-blame for their liver disease.</p></div><div><h3>Conclusions</h3><p>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.</p></div><div><h3>Impact and implications</h3><p>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 <em>per se</em>, is strongly and independently associated with a substantial impairment of their quality of life. 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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.</p></div><div><h3>Results</h3><p>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 <em>p</em> <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, <em>p <</em>0.02). 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引用次数: 0
摘要
背景& 目的非酒精性脂肪肝（NAFLD）/代谢功能障碍相关性脂肪肝（MASLD）患者面临着多方面的疾病负担，其中包括健康相关生活质量（HRQL）受损和潜在的耻辱感。我们旨在评估非酒精性脂肪肝患者的肝病负担以及污名化经历与 HRQL 之间的关系。结果来自24个国家的2117名非酒精性脂肪肝患者完成了LDB调查（中东和北非占48%，欧洲占18%，美国占16%，亚洲占18%），778人参加了CLDQ-NASH调查。在研究小组中，9%的人表示因非酒精性脂肪肝而蒙受耻辱，26%的人表示因肥胖而蒙受耻辱。报告因非酒精性脂肪肝而蒙受耻辱的参与者的 CLDQ-NASH 得分要低得多（所有 p <0.0001）。在多变量分析中，因非酒精性脂肪肝而遭受鄙视或歧视的经历是较低HRQL评分的最强独立预测因素（β值为评分范围大小的-5%至-8%，p <0.02）。因肥胖而遭受污名化的经历与较低的活动、情绪健康、疲劳和担忧领域得分相关，而对 "脂肪肝 "一词感到不舒服与较低的情绪健康得分相关（均为 p <0.05）。结论 对非酒精性脂肪肝患者的污名化，无论是由肥胖还是由非酒精性脂肪肝引起的，都与他们的 HRQL 严重受损密切相关。影响和意义非酒精性脂肪肝（NAFLD）患者（最近更名为代谢功能障碍相关性脂肪性肝病（MASLD））的健康相关生活质量可能会受损，并受到鄙视。通过一项专门设计的调查，我们发现，非酒精性脂肪肝患者的污名化，无论是由肥胖还是肝病本身引起的，都与他们生活质量的严重受损密切相关。治疗非酒精性脂肪肝患者的医生应该意识到污名化的深远影响，在这种疾病负担的背景下，自责的发生率很高，而且医生的看法可能并不能充分反映患者对疾病的看法和经历。
The impact of stigma on quality of life and liver disease burden among patients with nonalcoholic fatty liver disease
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.
期刊介绍：
JHEP Reports is an open access journal that is affiliated with the European Association for the Study of the Liver (EASL). It serves as a companion journal to the highly respected Journal of Hepatology.
The primary objective of JHEP Reports is to publish original papers and reviews that contribute to the advancement of knowledge in the field of liver diseases. The journal covers a wide range of topics, including basic, translational, and clinical research. It also focuses on global issues in hepatology, with particular emphasis on areas such as clinical trials, novel diagnostics, precision medicine and therapeutics, cancer research, cellular and molecular studies, artificial intelligence, microbiome research, epidemiology, and cutting-edge technologies.
In summary, JHEP Reports is dedicated to promoting scientific discoveries and innovations in liver diseases through the publication of high-quality research papers and reviews covering various aspects of hepatology.
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