A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study

[Introduction and Objectives] Patients increasingly use social media to share and access health-related information and experiences. This study employed social media listening to gain patient-centric insights into metabolic dysfunction-associated steatotic liver disease (MASLD), formerly known as no...

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Autores: Lazarus, Jeffrey V., Alazawi, William, Basuroy, Ron, Castera, Laurent, Estulin, Dmitry, Koulla, Yiannoula, Prasad, Preethy, Romero-Gómez, Manuel, Takahashi, Hirokazu, Wong, Vincent Wai-Sun, Schattenberg, Jörn M.
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2025
País:España
Institución:Consejo Superior de Investigaciones Científicas (CSIC)
Repositorio:DIGITAL.CSIC. Repositorio Institucional del CSIC
OAI Identifier:oai:digital.csic.es:10261/390381
Acceso en línea:http://hdl.handle.net/10261/390381
https://api.elsevier.com/content/abstract/scopus_id/85211752458
Access Level:acceso abierto
Palabra clave:MASLD
Metabolic dysfunction-associated steatotic liver disease
NAFLD
Non-alcoholic steatohepatitis
Patient journey
Social media
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spelling A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD studyLazarus, Jeffrey V.Alazawi, WilliamBasuroy, RonCastera, LaurentEstulin, DmitryKoulla, YiannoulaPrasad, PreethyRomero-Gómez, ManuelTakahashi, HirokazuWong, Vincent Wai-SunSchattenberg, Jörn M.MASLDMetabolic dysfunction-associated steatotic liver diseaseNAFLDNon-alcoholic steatohepatitisPatient journeySocial media[Introduction and Objectives] Patients increasingly use social media to share and access health-related information and experiences. This study employed social media listening to gain patient-centric insights into metabolic dysfunction-associated steatotic liver disease (MASLD), formerly known as non-alcoholic fatty liver disease (NAFLD).[Materials and Method] Publicly available social media data was collected between November 4th, 2020, and November 4th, 2022, about MASLD from eight countries: Brazil, China, France, Germany, Japan, South Korea, Spain, and the United Kingdom. The analysis involved capturing patient conversations on their journey stages (causes-risk factors, symptoms, diagnosis, and treatment), unmet needs, and impact on patient's quality of life (QoL) from various social media platforms to gain insights associated with MASLD.[Results] A total of 1600 patient-centric posts were analyzed. The patient journey was the most prevalent topic (92 %) mentioned, followed by comorbidities (38 %) and interactions with HCPs (26 %, health care professionals). Key causes discussed included unhealthy diet (39 %) and overweight/obese (32 %), while the most mentioned symptoms were fatigue (20 %) and pain or abdominal discomfort (20 %). Ultrasound (n=170/553, 31 %) was the most used diagnosis, followed by blood tests (n=130/553, 24 %) and liver function tests (n=91/553, 16 %). Lifestyle management techniques were mainly the standard of care, followed by treatment (n=270/1061, 25 %) and follow-ups with HCPs (n=133/1061, 13 %). Over half (54 %) of the QoL discussion (n=104/192) focused on patients’ comorbidities, and 27 % on disease severity, indicating that having MASLD in moderate to severe form with comorbidities significantly affects patients’ quality of life. An emotional analysis revealed that patients were worried and frustrated about their condition but were also hopeful and determined to improve their health. Nearly 38 % of the posts mentioned that patients were emotionally affected by negative feelings, especially those with multiple comorbidities. Lack of access to knowledgeable HCPs and treatment options were the most frequently discussed unmet needs.[Conclusions] This analysis of NAFLD patient experiences introduces a unique approach for deriving insights into patients' experiences and their impact on QoL. These insights have the potential to complement conventional methods and foster patient-centric research.This study was funded by Novo Nordisk Healthcare.Peer reviewedNovo NordiskPrasad, Preethy [0009-0000-1658-8652]Romero-Gómez, Manuel [0000-0001-8494-8947]Wong, Vincent Wai-Sun [0000-0003-2215-9410]Consejo Superior de Investigaciones Científicas [https://ror.org/02gfc7t72]202520252025info:eu-repo/semantics/articlehttp://purl.org/coar/resource_type/c_6501Publisher's versioninfo:eu-repo/semantics/publishedVersionapplication/pdfhttp://hdl.handle.net/10261/390381https://api.elsevier.com/content/abstract/scopus_id/85211752458reponame:DIGITAL.CSIC. Repositorio Institucional del CSICinstname:Consejo Superior de Investigaciones Científicas (CSIC)InglésThe underlying dataset has been published as supplementary material of the article in the publisher platform at DOI https://doi.org/10.1016/j.aohep.2024.101741https://doi.org/10.1016/j.aohep.2024.101741Síinfo:eu-repo/semantics/openAccessoai:digital.csic.es:10261/3903812026-05-22T06:33:51Z
dc.title.none.fl_str_mv A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
title A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
spellingShingle A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
Lazarus, Jeffrey V.
MASLD
Metabolic dysfunction-associated steatotic liver disease
NAFLD
Non-alcoholic steatohepatitis
Patient journey
Social media
title_short A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
title_full A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
title_fullStr A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
title_full_unstemmed A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
title_sort A social media listening study of patients' experiences relating to metabolic dysfunction-associated steatotic liver disease: The LISTEN-MASLD study
dc.creator.none.fl_str_mv Lazarus, Jeffrey V.
Alazawi, William
Basuroy, Ron
Castera, Laurent
Estulin, Dmitry
Koulla, Yiannoula
Prasad, Preethy
Romero-Gómez, Manuel
Takahashi, Hirokazu
Wong, Vincent Wai-Sun
Schattenberg, Jörn M.
author Lazarus, Jeffrey V.
author_facet Lazarus, Jeffrey V.
Alazawi, William
Basuroy, Ron
Castera, Laurent
Estulin, Dmitry
Koulla, Yiannoula
Prasad, Preethy
Romero-Gómez, Manuel
Takahashi, Hirokazu
Wong, Vincent Wai-Sun
Schattenberg, Jörn M.
author_role author
author2 Alazawi, William
Basuroy, Ron
Castera, Laurent
Estulin, Dmitry
Koulla, Yiannoula
Prasad, Preethy
Romero-Gómez, Manuel
Takahashi, Hirokazu
Wong, Vincent Wai-Sun
Schattenberg, Jörn M.
author2_role author
author
author
author
author
author
author
author
author
author
dc.contributor.none.fl_str_mv Novo Nordisk
Prasad, Preethy [0009-0000-1658-8652]
Romero-Gómez, Manuel [0000-0001-8494-8947]
Wong, Vincent Wai-Sun [0000-0003-2215-9410]
Consejo Superior de Investigaciones Científicas [https://ror.org/02gfc7t72]
dc.subject.none.fl_str_mv MASLD
Metabolic dysfunction-associated steatotic liver disease
NAFLD
Non-alcoholic steatohepatitis
Patient journey
Social media
topic MASLD
Metabolic dysfunction-associated steatotic liver disease
NAFLD
Non-alcoholic steatohepatitis
Patient journey
Social media
description [Introduction and Objectives] Patients increasingly use social media to share and access health-related information and experiences. This study employed social media listening to gain patient-centric insights into metabolic dysfunction-associated steatotic liver disease (MASLD), formerly known as non-alcoholic fatty liver disease (NAFLD).
publishDate 2025
dc.date.none.fl_str_mv 2025
2025
2025
dc.type.none.fl_str_mv info:eu-repo/semantics/article
http://purl.org/coar/resource_type/c_6501
Publisher's version
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/10261/390381
https://api.elsevier.com/content/abstract/scopus_id/85211752458
url http://hdl.handle.net/10261/390381
https://api.elsevier.com/content/abstract/scopus_id/85211752458
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv The underlying dataset has been published as supplementary material of the article in the publisher platform at DOI https://doi.org/10.1016/j.aohep.2024.101741
https://doi.org/10.1016/j.aohep.2024.101741
Sí
dc.rights.none.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
dc.source.none.fl_str_mv reponame:DIGITAL.CSIC. Repositorio Institucional del CSIC
instname:Consejo Superior de Investigaciones Científicas (CSIC)
instname_str Consejo Superior de Investigaciones Científicas (CSIC)
reponame_str DIGITAL.CSIC. Repositorio Institucional del CSIC
collection DIGITAL.CSIC. Repositorio Institucional del CSIC
repository.name.fl_str_mv
repository.mail.fl_str_mv
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score 15,81155

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