Presentation Authors: Gabriela Gonzalez*, Yuliya Zekster, Los Angeles, CA, Carine Khalil, Kristina Vaculik, Corey Arnold, Christopher V Almario, Brennan M.R. Spiegel, Los Angeles , CA, Jennifer T. Anger, Los Angeles, CA
Introduction: Most qualitative studies of women stress urinary incontinence (SUI) have relied on in-person interviews and surveys, some of which have been limited by inclusion of one specific population. We attempted to capture the complete patient experience of women with SUI by conducting a large-scale digital ethnographic analysis of anonymous online posts.
Methods: We collected 986 posts from 98 social media sites utilizing keywords with a Java-based natural language processing platform and Treato, a social media data mining service. 200 randomized posts were analyzed using grounded theory methodology to identify preliminary themes. To substantiate our qualitative analysis, we applied a Latent Dirichlet Allocation (LDA) probabilistic topic modeling process to our dataset of 986 posts to provide quantitative analysis and identify additional themes that could remain unidentified with the grounded theory methodology.
Results: Our social network analysis yielded six themes with subthemes (Figure 1). The thematic analysis suggests that women turn to these online communities for advice when learning to handle the quality of life impact of their SUI quality, navigating specialty care, and reaching a decision regarding treatment. Additionally, women often discussed perceived risk factors and provided recommendations to each other for prevention and treatment. These forums allow women to share information among themselves relating to surgery outcomes and complications--information that perhaps they might not feel comfortable addressing with their surgeon. Many of the concerns dealt with difficulty in reaching a diagnosis, decisions about the use of mesh, and concomitant sling procedures at the time of pelvic organ prolapse repairs.
Conclusions: Analysis of social media interactions revealed patient values that influence decision making when considering the management of SUI and allow the medical community to understand preventive behaviors that women are recommending among themselves. Our findings provide insight into essential patient behaviors that can be targeted to create appropriate decision aids and counseling about risk factors to improve patient-centered care.
Source of Funding: A pilot grant from NIDDK Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium.