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Understanding stakeholders’ experience with sickle cell disease by social media listening across Europe

2025Artigo científico Acesso aberto
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dc.contributor.authorBrás, Daniel
dc.contributor.authorBento, Celeste
dc.contributor.authorAsaithambi, Sathyaraj
dc.contributor.authorChauhan, Jyoti
dc.contributor.authorMoital, Ines
dc.contributor.institutionCentro de Investigação em Saúde Pública (CISP/PHRC)
dc.contributor.institutionComprehensive Health Research Centre (CHRC) - Pólo ENSP
dc.contributor.institutionEscola Nacional de Saúde Pública (ENSP)
dc.contributor.pblFrontiers Media
dc.date.accessioned2025-12-05T21:16:17Z
dc.date.available2025-12-05T21:16:17Z
dc.date.issued2025
dc.descriptionFunding Information: The author(s) declare that financial support was received for the research and/or publication of this article. The study received funding from Novartis Pharma AG. The funder was not involved in the study design, collection, analysis, interpretation of data, the writing of this article, or the decision to submit it for publication. Publisher Copyright: Copyright © 2025 Brás, Bento, Asaithambi, Chauhan and Moital.
dc.description.abstractBackground: The use of social media platforms for sharing health-related information is on the rise. Sickle cell disease (SCD) affects millions of people worldwide. However, discussions by SCD stakeholders on social media remain unexplored. This study aimed to analyze discussions among SCD stakeholders on social media to understand their awareness of SCD and to explore their perceptions of the patient journey, hospitalizations and complications due to SCD, the impact of the disease on quality of life (QoL), and current unmet needs by using social media listening (SML). Methods: Data was retrospectively collected from April 2019 to April 2021 on SCD specific terms in 14 European countries from blogs, forums, and social networking sites (Twitter, public Facebook, YouTube, and Instagram). Advanced social media analytics tools, Talkwalker and Social Studio, were used for data aggregation and analysis. Conversations were filtered and contextualized through a 3-tier technique involving automated relevancy algorithms and manual review. Results: Of 317.9K conversations on SCD (93% Twitter), 945 posts on relevant patient-centric conversation were analyzed. Most patients were females (73%) and ≤30 years old (75%). Patient journey stages were addressed in 52% of conversations. Patient journey conversations were mainly regarding symptoms (56%) (mainly pain episodes, pain in general, and vaso-occlusive crises) and treatment (44%). Conversations on hospital visits or hospitalization mostly revolved around crises faced due to symptoms. Impact on QoL, especially emotional impact (56%), was also extensively discussed. Unmet needs were derived from 24% of the conversations, lack of awareness of SCD (42%) and lack of empathy and support from HCPs (24%) being the most frequent topics. Patients reported having their symptoms questioned or dismissed by healthcare professionals, which they attributed to racial bias. Conclusion: SML proves to be a useful tool for exploring the real experiences, concerns, and needs of SCD patients and other stakeholders. Analysis of SCD-related social media posts reveals that discussions mainly focus on symptoms, particularly pain, treatment, and the emotional impact of SCD on QoL. These insights are crucial for enhancing the management of SCD patients.en
dc.description.versionpublishersversion
dc.description.versionpublished
dc.format.extent1789914
dc.identifier.doi10.3389/fgene.2025.1629510
dc.identifier.issn1664-8021
dc.identifier.otherPURE: 136492507
dc.identifier.otherPURE UUID: 49bdaacb-9438-4c6c-85fd-0516089f2615
dc.identifier.otherScopus: 105018845300
dc.identifier.otherWOS: 001591424000001
dc.identifier.otherPubMed: 41089213
dc.identifier.otherPubMedCentral: PMC12516078
dc.identifier.urihttp://hdl.handle.net/10362/191565
dc.identifier.urlhttps://www.scopus.com/pages/publications/105018845300
dc.language.isoeng
dc.peerreviewedyes
dc.subjectcaregiver
dc.subjectpatient
dc.subjectquality of life
dc.subjectsickle cell disease
dc.subjectsocial media listening
dc.subjectMolecular Medicine
dc.subjectGenetics
dc.subjectGenetics(clinical)
dc.subjectSDG 3 - Good Health and Well-being
dc.titleUnderstanding stakeholders’ experience with sickle cell disease by social media listening across Europeen
dc.typejournal article
degois.publication.titleFrontiers in Genetics
degois.publication.volume16
dspace.entity.typePublication
rcaap.rightsopenAccess

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