Understanding stakeholders’ experience with sickle cell disease by social media listening across Europe
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.
Authors
- Jyoti Chauhan (ORCID: https://orcid.org/0000-0002-7115-1709)
- S. Aasaithambi (ORCID: https://orcid.org/0000-0001-9264-0846)
- Daniel Brás (ORCID: https://orcid.org/0000-0002-0598-3013)
- Celeste Bento (ORCID: https://orcid.org/0000-0003-1080-411X)
- Inês Moital
Institutions
- Hospitais da Universidade de Coimbra (PT)
- Novartis (India) (IN)
- Centre for Research in Anthropology (PT)
- Laboratório Edol (Portugal) (PT)
- Universidade Nova de Lisboa (PT)
Publication Details
- Journal
- Frontiers in Genetics
- Published
- 2025-09-29
- DOI
- https://doi.org/10.3389/fgene.2025.1629510
- Primary Topic
- Hemoglobinopathies and Related Disorders
- Type
- article
- Field-Weighted Citation Impact
- 0.00
Funders
- Novartis Pharma