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

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dc.contributor.authorYounossi, Zobair M.
dc.contributor.authorAlQahtani, Saleh A.
dc.contributor.authorFunuyet-Salas, Jesus
dc.contributor.authorRomero-Gomez, Manuel
dc.contributor.authorYilmaz, Yusuf
dc.contributor.authorKeklikkiran, Caglayan
dc.contributor.authorAlswat, Khalid
dc.contributor.authorYu, Ming-Lung
dc.contributor.authorLiu, Chun-Jen
dc.contributor.authorFan, Jian-Gao
dc.contributor.authorZheng, Ming-Hua
dc.contributor.authorBurra, Patrizia
dc.contributor.authorFrancque, Sven M.
dc.contributor.authorCastera, Laurent
dc.contributor.authorSchattenberg, Joern M.
dc.contributor.authorNewsome, Philip N.
dc.contributor.authorAllen, Alina M.
dc.contributor.authorEl-Kassas, Mohamed
dc.contributor.authorTreeprasertsuk, Sombat
dc.contributor.authorHameed, Saeed
dc.contributor.authorWong, Vincent Wai-Sun
dc.contributor.authorZelber-Sagi, Shira
dc.contributor.authorTakahashi, Hirokazu
dc.contributor.authorKawaguchi, Takumi
dc.contributor.authorFernandez, Marlen I. Castellanos
dc.contributor.authorDuseja, Ajay
dc.contributor.authorArrese, Marco
dc.contributor.authorRinella, Mary
dc.contributor.authorSingal, Ashwani K.
dc.contributor.authorGordon, Stuart C.
dc.contributor.authorFuchs, Michael
dc.contributor.authorEskridge, Wayne
dc.contributor.authorAlkhouri, Naim
dc.contributor.authorCusi, Kenneth
dc.contributor.authorLoomba, Rohit
dc.contributor.authorRanagan, Jane
dc.contributor.authorKautz, Achim
dc.contributor.authorOng, Janus P.
dc.contributor.authorKugelmas, Marcelo
dc.contributor.authorEguchi, Yuichiro
dc.contributor.authorDiago, Moises
dc.contributor.authorGerber, Lynn
dc.contributor.authorLam, Brian
dc.contributor.authorFornaresio, Lisa
dc.contributor.authorNader, Fatema
dc.contributor.authorSpearman, C. Wendy
dc.contributor.authorRoberts, Stuart K.
dc.contributor.authorChan, Wah-Kheong
dc.contributor.authorSilva, Marcelo
dc.contributor.authorRacila, Andrei
dc.contributor.authorGolabi, Pegah
dc.contributor.authorAnanchuensook, Prooksa
dc.contributor.authorHenry, Linda
dc.contributor.authorStepanova, Maria
dc.contributor.authorCarrieri, Patrizia
dc.contributor.authorLazarus, Jeffrey, V
dc.date.accessioned2025-01-20T16:13:20Z
dc.date.available2025-01-20T16:13:20Z
dc.date.issued2024
dc.description.abstractBackground & 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. (c) 2024 The Authors. Published by Elsevier B.V. on behalf of European Association for the Study of the Liver (EASL). This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
dc.fuente.origenWOS
dc.identifier.doi10.1016/j.jhepr.2024.101066
dc.identifier.eissn2589-5559
dc.identifier.urihttps://doi.org/10.1016/j.jhepr.2024.101066
dc.identifier.urihttps://repositorio.uc.cl/handle/11534/90381
dc.identifier.wosidWOS:001263290300001
dc.issue.numero7
dc.language.isoen
dc.revistaJhep reports
dc.rightsacceso restringido
dc.subject.ods03 Good Health and Well-being
dc.subject.odspa03 Salud y bienestar
dc.titleThe impact of stigma on quality of life and liver disease burden among patients with nonalcoholic fatty liver disease
dc.typeartículo
dc.volumen6
sipa.indexWOS
sipa.trazabilidadWOS;2025-01-12
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