Social Media Discussions Provide new Insight About Perceptions of Hydroxyurea in the Sickle Cell Community

Hydroxyurea (HU) has proven efficacious for treating sickle cell disease (SCD) and is recommended for most patients. However, HU is underutilized and reasons for lack of uptake are unclear. Past qualitative studies to identify barriers have been small and limited to clinical settings. Thus, to better understand barriers to HU there is a need to explore perceptions of patients and families from the broader community. We conducted a qualitative study of Facebook messages posted in an online sickle cell support group to identify barriers and facilitators to hydroxyurea use. We collected a total of 22 223 user‐generated original messages and comments posted in the SCD Unite group between January 2014 and November 2015. From these messages, we identified those containing any of the following terms: “Hydrea,” “Droxia,” “Hydroxycarbamide,” “Hydroxurea,” “Hydroxy,” “HU,” “Urea,” and “hydro*,” along with the comments associated with these posts. All nontext based posts (ie, pictures, videos, and links) were excluded. The resultant data set included 145 total original messages and 2618 associated comments. We performed content coding and analysis on all 145 original message posts followed by thematic analysis of a select subset of discussion threads, which were defined as a single original message plus their associated comments. Abstract source Full text