Social media discussions provide new insight about perceptions of hydroxyurea in the sickle cell community
Authors: Aisha L. Walker, Laura M. Gaydos, Rosta Farzan, Laura De Castro, Charles Jonassaint
Journal: American Journal of Hematology (2019)

Hydroxyurea (HU) has proven efficacious for treating sickle cell disease (SCD) and is recommended for most patients.1 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.2 Thus, to better understand barriers to HU there is a need to explore perceptions of patients and families from the broader community.3 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. Original message authors self-identified as patients (41%), parents (26%), and other family members (4%); the stakeholder role in the remaining posts was unclear. The majority of posts (55%) were asking HU-specific questions, while other posts (19%) were opinions of HU, inclusion of HU in a list of medications, or sharing drug-related facts. Questions regarding HU-specific side effects and efficacy were included in 44 messages, while questions seeking others' opinions, experiences, and advice about HU were included in 45 posts. Using a validated purposeful sampling methodology for qualitative analysis,4 we selected information-rich cases based on criterion to identify the posts most indicative of patients and parents considering HU therapy. We selected discussion threads beginning with an original message that met all three of the following criteria: posted by patients or parents, asked a question about HU, and mentioned a medical provider recommendation of HU. In total, we analyzed 25 original messages and 481 comments to identify major themes related to stakeholder perceptions of HU utilization. General support of HU was one major theme we identified. Among 163 user comments that addressed support of HU, 35% expressed supportive statements and only 19% expressed statements that were nonsupportive. All other comments were neutral. Not surprisingly, support for HU and decision to take it was closely linked to themes of perceived efficacy and side effects of HU. There were 182 references to perceived efficacy among all comments with 71% indicating that HU improved disease conditions with stakeholders using terms such as “it works.” However, there were also a substantial number of comments (92 out of 113) that referenced concerns about side effects of HU; hair loss or potential of hair loss, cited in 29% of the comments, was the most frequently mentioned concern. In 58 comments, former and nonusers of HU indicated that the combination of lack of perceived efficacy plus side effects was the impetus for stopping the medication. Table 1 shows evidentiary quotes of supportive (Q1) and nonsupportive (Q2) comments related to perceived efficacy and side effects, respectively. These findings are similar to results of traditional in-person qualitative studies of barriers and facilitators of HU utilization.2 Q1 Q2 You will still have a crisis but not as many. Your purpose with this setback known as sickle cell is to have a quality of life that you can deal with. A life that can let you live a normal life. Please try it. I hate it personally cause it doesn't do anything for me but make my white counts low and make me sick. But for some people it really helps them a lot. Just not for me. Q3 Q4 These doctors can't tell if I'm in crisis or not because it makes my counts super high. I've had Avn [Avascular Necrosis], and eye complications go undetected…This drug is not for everyone … my docs really don't believe me and quickly release me to go home when I'm in crisis because the hydroxreua does a wonderful job making my blood levels appear awesome. For sickle cell that's all docs go by is what your hemoglobin, retic. Count, bilirubin levels are in comparison to how you feel. I recommend to all to not take it unless you have many crisis Q5 Q6 Thanks everyone.......yall have help me a lot! I'm going to try it......wish me luck! Thank you everyone for sharing your experiences with Hydroxyurea. As a parent you always want to do what's best for your child/children and I feel confident in my decision. Now I know people say the med is actually just masking the symptoms but actually doing more harm than good… does one stop a medication and stop all the good its doing because of a potential negative in the future? A total of 14 comments were made in response to this original message including reports of incidents in which patients felt as though improvements in blood laboratory values by HU could lead to a missed diagnosis of certain complications of SCD. Respondents also linked masking of symptoms with physicians' disregard for patients' self-report of feeling ill or pain, promoting distrust between patients and providers. Two example quotations of patients explaining their perceptions are demonstrated in Table 1 (Q3 and Q4). This newly identified theme exemplifies barriers to the decision to take HU that have not been reported using traditional qualitative methods. It provides a novel area for investigation related to patient/provider communication and relationships to increase HU uptake and adherence. Perhaps the most prominent theme evident from the discussion threads was that the SCD Unite group is a supportive forum that can influence patients' and caretakers' decisions to use HU. When members posted a question about HU, they received an average of 19 comments back from the online community. The majority of these question-based discussion threads (17 out of 25) concluded with the original author making a final comment thanking peers for input. Furthermore, authors often also made resolution statements such as those in Table 1 (Q5 and Q6), indicating that community responses helped to influence or affirm the decision regarding HU utilization. These data demonstrate that SCD Unite was heavily used for support-seeking behavior in services to making decisions regarding HU. In conclusion, this article (1) provides new insight into an emergent potential barrier to HU use in the form of masking symptoms and (2) emphasizes the influential role of online social support networks for making therapeutic decisions in the sickle cell community. While the finding of masking SCD symptoms warrants further exploration, our findings highlight the ability of this novel, social media-based approach to elicit a broader understanding of SCD patient perceptions and support structures. Traditional in-person studies of support structures among patients with SCD found that informational and emotional social support in a community or family environment is positively associated with the patients' willingness to receive care and initiate disease-related therapy.5 We observed a similar dynamic in SCD Unite. Thus, findings from this social media group not only underscore how involved family and friends are in the care and treatment of those living with SCD, but they also demonstrate that social support structures operate through a virtual medium similar to nonvirtual environments in the SCD community. It is not surprising that the SCD community has turned to social media for help with decision making given that an estimated 72% of Internet users seek health information online.6 Because of the strong influence of social media communications on patients and families, it is important that the medical and scientific community begin recognizing opportunities to leverage social media in health-care delivery. Ultimately, social media platforms can provide a powerful resource for understanding health behaviors and addressing health issues in SCD. This novel social media-based approach has potential to inform the growing literature around HU, as well as other treatments, and ultimately improve the uptake and effectiveness of evidence-based therapies for SCD. Nothing to report.