Global survey of stigma among physicians and patients with nonalcoholic fatty liver disease
Zobair M Younossi
(1)
,
Saleh A Alqahtani
(2, 3, 4)
,
Khalid Alswat
(2, 5)
,
Yusuf Yilmaz
(2, 6)
,
Caglayan Keklikkiran
(2, 6)
,
Jesús Funuyet-Salas
(2, 7)
,
Manuel Romero-Gómez
(2, 8, 9)
,
Jian-Gao Fan
(2, 10)
,
Ming-Hua Zheng
(2, 11, 12)
,
Mohamed El-Kassas
(2, 13)
,
Laurent Castera
(2, 14)
,
Chun-Jen Liu
(2, 15)
,
Vincent Wai-Sun Wong
(2, 16)
,
Shira Zelber-Sagi
(2, 17)
,
Alina M Allen
(2, 18)
,
Brian Lam
(2, 1)
,
Sombat Treeprasertsuk
(2, 19)
,
Saeed Hameed
(2, 20)
,
Hirokazu Takahashi
(2, 21)
,
Takumi Kawaguchi
(2, 22)
,
Jörn M Schattenberg
(2, 23)
,
Ajay Duseja
(2, 24)
,
Phil N Newsome
(2, 25)
,
Sven Francque
(2, 26, 27)
,
C Wendy Spearman
(2, 28)
,
Marlen I Castellanos Fernández
(2, 29)
,
Patrizia Burra
(2, 30)
,
Stuart K Roberts
(2, 31)
,
Wah-Kheong Chan
(2, 32)
,
Marco Arrese
(2, 33)
,
Marcelo Silva
(2, 34)
,
Mary Rinella
(2, 35)
,
Ashwani K Singal
(2, 36, 37)
,
Stuart Gordon
(2, 38)
,
Michael Fuchs
(2, 39)
,
Naim Alkhouri
(2, 40)
,
Kenneth Cusi
(2, 41)
,
Rohit Loomba
(2, 42)
,
Jane Ranagan
(2, 43)
,
Wayne Eskridge
(2, 44)
,
Achim Kautz
(2, 45)
,
Janus P Ong
(2, 46)
,
Marcelo Kugelmas
(2, 47)
,
Yuichiro Eguchi
(2, 21)
,
Moises Diago
(2, 48, 49)
,
Ming-Lung Yu
(2, 50, 51)
,
Lynn Gerber
(2, 1)
,
Lisa Fornaresio
(3)
,
Fatema Nader
(2, 52)
,
Linda Henry
(2, 1, 52)
,
Andrei Racila
(1, 52)
,
Pegah Golabi
(1, 52)
,
Maria Stepanova
(2, 1, 52)
,
Patrizia Carrieri
(53, 2)
,
Jeffrey V Lazarus
(2, 54, 55)
1
IHS -
Inova Health System [Falls Church, VA, USA]
2 The Global NASH Council [Washington, DC, USA]
3 JHU - Johns Hopkins University
4 Alfaisal University
5 KSU - King Saud University [Riyadh]
6 Recep Tayyip Erdogan University
7 Universidad de Sevilla = University of Seville
8 Hospital Universitario Virgen del Rocío [Sevilla]
9 IBIS/HUVR - Instituto de Biomedicina de Sevilla [Sevilla, Spain]
10 Shanghai Jiao Tong University School of Medicine
11 The First Affiliated Hospital of Wenzhou Medical University [Wenzhou, China]
12 WMU - Wenzhou Medical University [Wenzhou, China]
13 Helwan University
14 CRI (UMR_S_1149 / ERL_8252 / U1149) - Centre de recherche sur l'Inflammation
15 NTUH - National Taiwan University Hospital [Taipei]
16 CUHK - The Chinese University of Hong Kong [Hong Kong]
17 University of Haifa [Haifa]
18 Mayo Clinic [Rochester]
19 Chulalongkorn University [Bangkok]
20 The Aga Khan University
21 Saga University [Japon]
22 Kurume University School of Medicine
23 University Medical Center [Mainz]
24 PGIMER - Post Graduate Institute of Medical Education and Research [Chandigarh, India]
25 University of Birmingham [Birmingham]
26 UZA - Antwerp University Hospital [Edegem]
27 UA - University of Antwerp
28 University of Cape Town
29 UH - University of Havana = Universidad de la Habana
30 Unipd - Università degli Studi di Padova = University of Padua
31 Hôpital The Alfred [VIC, Australia]
32 UM - University of Malaya = Universiti Malaya [Kuala Lumpur, Malaisie]
33 UC - Pontificia Universidad Católica de Chile
34 Hospital Universitario Austral
35 University of Chicago
36 University of Louisville School of Medicine [Louisville]
37 Jewish General Hospital
38 CHWBUH - Corewell Health William Beaumont University Hospital [Royal Oak, MI, USA]
39 VCU - Virginia Commonwealth University
40 ALH - Arizona Liver Health [Phoenix, Arizona, USA]
41 UF - University of Florida [Gainesville]
42 UC San Diego - University of California [San Diego]
43 FMC - Focus Medical Communications [East Hanover, NJ, USA]
44 FLF - Fatty Liver Foundation [Boise, ID, USA]
45 Kautz 5 gUG [Köln, Germany]
46 UP System - University of the Philippines
47 SDG - South Denver Gastroenterology [Englewood, CO, USA]
48 UV - Universitat de València = University of Valencia
49 CGUHV - Consortium General University Hospital of Valencia [Spain]
50 NSYSU - National Sun Yat-sen University
51 KMU - Kaohsiung Medical University [Kaohsiung, Taïwan]
52 CORLD - Center for Outcomes Research in Liver Diseases [Washington, DC, USA]
53 SESSTIM - U1252 INSERM - Aix Marseille Univ - UMR 259 IRD - Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale
54 ISGlobal - Instituto de Salud Global - Institute For Global Health [Barcelona]
55 UAB - Universitat Autònoma de Barcelona = Autonomous University of Barcelona = Universidad Autónoma de Barcelona
2 The Global NASH Council [Washington, DC, USA]
3 JHU - Johns Hopkins University
4 Alfaisal University
5 KSU - King Saud University [Riyadh]
6 Recep Tayyip Erdogan University
7 Universidad de Sevilla = University of Seville
8 Hospital Universitario Virgen del Rocío [Sevilla]
9 IBIS/HUVR - Instituto de Biomedicina de Sevilla [Sevilla, Spain]
10 Shanghai Jiao Tong University School of Medicine
11 The First Affiliated Hospital of Wenzhou Medical University [Wenzhou, China]
12 WMU - Wenzhou Medical University [Wenzhou, China]
13 Helwan University
14 CRI (UMR_S_1149 / ERL_8252 / U1149) - Centre de recherche sur l'Inflammation
15 NTUH - National Taiwan University Hospital [Taipei]
16 CUHK - The Chinese University of Hong Kong [Hong Kong]
17 University of Haifa [Haifa]
18 Mayo Clinic [Rochester]
19 Chulalongkorn University [Bangkok]
20 The Aga Khan University
21 Saga University [Japon]
22 Kurume University School of Medicine
23 University Medical Center [Mainz]
24 PGIMER - Post Graduate Institute of Medical Education and Research [Chandigarh, India]
25 University of Birmingham [Birmingham]
26 UZA - Antwerp University Hospital [Edegem]
27 UA - University of Antwerp
28 University of Cape Town
29 UH - University of Havana = Universidad de la Habana
30 Unipd - Università degli Studi di Padova = University of Padua
31 Hôpital The Alfred [VIC, Australia]
32 UM - University of Malaya = Universiti Malaya [Kuala Lumpur, Malaisie]
33 UC - Pontificia Universidad Católica de Chile
34 Hospital Universitario Austral
35 University of Chicago
36 University of Louisville School of Medicine [Louisville]
37 Jewish General Hospital
38 CHWBUH - Corewell Health William Beaumont University Hospital [Royal Oak, MI, USA]
39 VCU - Virginia Commonwealth University
40 ALH - Arizona Liver Health [Phoenix, Arizona, USA]
41 UF - University of Florida [Gainesville]
42 UC San Diego - University of California [San Diego]
43 FMC - Focus Medical Communications [East Hanover, NJ, USA]
44 FLF - Fatty Liver Foundation [Boise, ID, USA]
45 Kautz 5 gUG [Köln, Germany]
46 UP System - University of the Philippines
47 SDG - South Denver Gastroenterology [Englewood, CO, USA]
48 UV - Universitat de València = University of Valencia
49 CGUHV - Consortium General University Hospital of Valencia [Spain]
50 NSYSU - National Sun Yat-sen University
51 KMU - Kaohsiung Medical University [Kaohsiung, Taïwan]
52 CORLD - Center for Outcomes Research in Liver Diseases [Washington, DC, USA]
53 SESSTIM - U1252 INSERM - Aix Marseille Univ - UMR 259 IRD - Sciences Economiques et Sociales de la Santé & Traitement de l'Information Médicale
54 ISGlobal - Instituto de Salud Global - Institute For Global Health [Barcelona]
55 UAB - Universitat Autònoma de Barcelona = Autonomous University of Barcelona = Universidad Autónoma de Barcelona
Zobair M Younossi
- Fonction : Auteur
- PersonId : 1175818
- ORCID : 0000-0001-9313-577X
Saleh A Alqahtani
- Fonction : Auteur
- PersonId : 1374664
- ORCID : 0000-0003-2017-3526
Khalid Alswat
- Fonction : Auteur
- PersonId : 1505156
- ORCID : 0000-0002-3521-8523
Yusuf Yilmaz
- Fonction : Auteur
- PersonId : 808085
- ORCID : 0000-0003-4518-5283
Caglayan Keklikkiran
- Fonction : Auteur
- PersonId : 1505157
- ORCID : 0000-0001-6304-5554
Jesús Funuyet-Salas
- Fonction : Auteur
- PersonId : 1505158
- ORCID : 0000-0002-4133-140X
Manuel Romero-Gómez
- Fonction : Auteur
- PersonId : 1167953
- ORCID : 0000-0001-8494-8947
Mohamed El-Kassas
- Fonction : Auteur
- PersonId : 1149304
- ORCID : 0000-0002-3396-6894
Laurent Castera
- Fonction : Auteur
- PersonId : 1505159
- ORCID : 0000-0002-6715-8588
Shira Zelber-Sagi
- Fonction : Auteur
- PersonId : 1242926
- ORCID : 0000-0002-1324-7497
Brian Lam
- Fonction : Auteur
- PersonId : 1505160
- ORCID : 0000-0003-2041-6874
Sombat Treeprasertsuk
- Fonction : Auteur
- PersonId : 1505161
- ORCID : 0000-0001-6459-8329
Saeed Hameed
- Fonction : Auteur
- PersonId : 1505162
- ORCID : 0000-0001-7218-6885
Hirokazu Takahashi
- Fonction : Auteur
- PersonId : 1505163
- ORCID : 0000-0002-2374-2889
Takumi Kawaguchi
- Fonction : Auteur
- PersonId : 1505164
- ORCID : 0000-0002-7064-4325
Jörn M Schattenberg
- Fonction : Auteur
- PersonId : 1151289
- ORCID : 0000-0002-4224-4703
Ajay Duseja
- Fonction : Auteur
- PersonId : 1374671
- ORCID : 0000-0003-3590-2664
Phil N Newsome
- Fonction : Auteur
- PersonId : 1201849
- ORCID : 0000-0001-6085-3652
Sven Francque
- Fonction : Auteur
- PersonId : 1151287
- ORCID : 0000-0002-7527-4714
C Wendy Spearman
- Fonction : Auteur
- PersonId : 825578
- ORCID : 0000-0003-3199-301X
Patrizia Burra
- Fonction : Auteur
- PersonId : 1374667
- ORCID : 0000-0002-8791-191X
Stuart K Roberts
- Fonction : Auteur
- PersonId : 1505165
- ORCID : 0000-0002-9015-7997
Wah-Kheong Chan
- Fonction : Auteur
- PersonId : 1201850
- ORCID : 0000-0002-9105-5837
Ashwani K Singal
- Fonction : Auteur
- PersonId : 1505166
- ORCID : 0000-0003-1207-3998
Michael Fuchs
- Fonction : Auteur
- PersonId : 1505167
- ORCID : 0000-0002-8186-0779
Kenneth Cusi
- Fonction : Auteur
- PersonId : 1374670
- ORCID : 0000-0002-8629-418X
Moises Diago
- Fonction : Auteur
- PersonId : 1505168
- ORCID : 0000-0002-8583-2433
Ming-Lung Yu
- Fonction : Auteur
- PersonId : 1505169
- ORCID : 0000-0001-8145-1900
Lisa Fornaresio
- Fonction : Auteur
- PersonId : 1505170
- ORCID : 0000-0002-9511-315X
Pegah Golabi
- Fonction : Auteur
- PersonId : 1505171
- ORCID : 0000-0001-9818-0983
Patrizia Carrieri
- Fonction : Auteur
- PersonId : 21176
- IdHAL : patrizia-carrieri
- ORCID : 0000-0002-6794-4837
- IdRef : 144323036
Jeffrey V Lazarus
- Fonction : Auteur
- PersonId : 1075803
- ORCID : 0000-0001-9618-2299
- IdRef : 09849290X
Résumé
Background & aims: Patients with fatty liver disease may experience stigma from the disease or comorbidities. In this cross-sectional study, we aimed to understand stigma among patients with nonalcoholic fatty liver disease (NAFLD)/nonalcoholic steatohepatitis (NASH) and healthcare providers.
Methods: Members of the Global NASH Council created two surveys about experiences/attitudes toward NAFLD and related diagnostic terms: a 68-item patient and a 41-item provider survey.
Results: Surveys were completed by 1,976 patients with NAFLD across 23 countries (51% Middle East/North Africa [MENA], 19% Europe, 17% USA, 8% Southeast Asia, 5% South Asia) and 825 healthcare providers (67% gastroenterologists/hepatologists) across 25 countries (39% MENA, 28% Southeast Asia, 22% USA, 6% South Asia, 3% Europe). Of all patients, 48% ever disclosed having NAFLD/NASH to family/friends; the most commonly used term was "fatty liver" (88% at least sometimes); "metabolic disease" or "MAFLD" were rarely used (never by >84%). Regarding various perceptions of diagnostic terms by patients, there were no substantial differences between "NAFLD", "fatty liver disease (FLD)", "NASH", or "MAFLD". The most popular response was being neither comfortable nor uncomfortable with either term (56%-71%), with slightly greater discomfort with "FLD" among the US and South Asian patients (47-52% uncomfortable). Although 26% of patients reported stigma related to overweight/obesity, only 8% reported a history of stigmatization or discrimination due to NAFLD. Among providers, 38% believed that the term "fatty" was stigmatizing, while 34% believed that "nonalcoholic" was stigmatizing, more commonly in MENA (43%); 42% providers (gastroenterologists/hepatologists 45% vs. 37% other specialties, p = 0.03) believed that the name change to metabolic dysfunction-associated steatotic liver disease (or MASLD) might reduce stigma. Regarding the new nomenclature, the percentage of providers reporting "steatotic liver disease" as stigmatizing was low (14%).
Conclusions: The perception of NAFLD stigma varies among patients, providers, geographic locations and sub-specialties.
Impact and implications: Over the past decades, efforts have been made to change the nomenclature of nonalcoholic fatty liver disease (NAFLD) to better align with its underlying pathogenetic pathways and remove any potential stigma associated with the name. Given the paucity of data related to stigma in NAFLD, we undertook this global comprehensive survey to assess stigma in NAFLD among patients and providers from around the world. We found there is a disconnect between physicians and patients related to stigma and related nomenclature. With this knowledge, educational programs can be developed to better target stigma in NAFLD among all stakeholders and to provide a better opportunity for the new nomenclature to address the issues of stigma.
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