Using Social Media to Assess Patient and Family Perceptions of Bone Marrow Transplant, Gene Therapy and Other Potentially Curative Treatments for Sickle Cell Disease (SCD)

Introduction: Sickle cell disease (SCD) is an inherited blood disorder associated with frequent pain, end-organ damage and early mortality. The daily management of SCD is often a burden to patients and their families and imposes significant costs on the healthcare system. Recent medical advancements present potential curative treatments for SCD. The efficacy and outcomes for bone marrow transplantation (BMT) is steadily improving and new interventions such as gene therapy (GT) are being actively pursued. The success of these treatments, however, is dependent on patient's acceptance of novel therapies and willingness to enroll in clinical trials. Effective dissemination of new therapies requires understanding patient perceptions and ensuring they are appropriately informed and educated on the benefits and risks of each therapy. There is limited data, however, on patient attitudes toward novel therapies or effective methods for improving patient education and perceptions.

A significant segment of the SCD community uses social media to seek health information or share their own views. User-generated data from these social media sites is a rich source of information for understanding patient-level barriers and facilitators to effective health care. Social media data may be more effective than traditional qualitative research approaches for identifying patient and family member perceptions of SCD-related therapies.

Study Objective: In the current study we examined user-generated data obtained from Facebook to understand their perceptions and primary concerns regarding curative therapies (e.g. BMT, GT) and treatments currently in the clinical trial stage.

Methods: We extracted 4 years (2012-2016) of data from the two SCD Facebook groups with the highest membership: Sickle Cell Warriors and Sickle Cell Unite. For each post we retrieved: number of likes and comments, and the message itself. We filtered posts using search terms for BMT, GT and drugs in clinical trials. We employed linguistic inquiry word count (LIWC) text analysis tools to extract language features from these messages; particularly, to understand psychological construct used in each messages, including affective, cognitive, and social processes. Each message was coded as having a positive, negative or neutral valence. To understand patient perceptions and knowledge regarding curative treatments and trial drugs, we will perform a qualitative analysis of the data using deductive codes according to published studies identified barriers and facilitators and inductive coding to identify previously unknown themes related to patient perceptions and knowledge.

Results: A total of 39,817 (8693 Warriors, 31124 Unite) original posts were extracted from the two SCD Facebook sites; 485 (1.2%) of these posts were BMT, GT or trial-drug related. There were 3291 comments to these post. On average, each posts received 6.7 (SD=11.2) comments and 17.6 (SD=44.4) likes. Posts related to treatments generated similar attention (i.e. comments and likes) to other types of posts on these Facebook sites. The LIWC analyses showed a more positive than negative sentiment expressed in the treatment posts; 72%-75% of posts include positive terms while 46%-48% of posts include negative terms. Qualitative analysis of the post content to reveal themes and specific topics discussed is forthcoming.

Conclusions: To our knowledge, this is the first study to use social media data to gather and analyze patient perception and knowledge regarding curative therapies and drug trials in SCD. This has implications for understanding how to improve patient perceptions and increase patient education which are keys for fostering patient participation in treatments and trials of novel treatments