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

ABSTRACT:

Background

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 In

SUBMITTER: Bras D 

PROVIDER: S-EPMC12516078 | biostudies-literature | 2025

REPOSITORIES: biostudies-literature