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: Although pelvic organ prolapse (POP) has a prevalence of 3-8%, feelings of shame and confusion have kept women from addressing their concerns with medical providers. Previous studies have focused on smaller focus groups and questionnaires to understand the patient experience. We sought to conduct a large-scale online community-based research analysis where patients share information anonymously, to characterize the decision-making, behavioral, psychological and illness experience of patients.
Methods: We collected 3,541 posts from 117 social media sites using a Java-based natural language processing platform utilizing keywords to automatically identify relevant posts from sites such as Facebook, Healthmagic, and Reddit. Additionally, we contracted with Treato, a social media data mining service that maintains an extensive database of patient content derived from e-forum health-related websites to provide us with posts from their database. 200 randomized posts were analyzed using a qualitative 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 3,541 posts to allow for semantic theme discovery of the entire dataset.
Results: Our qualitative analysis generated four themes with various subthemes (Figure 1). The LDA topic modeling analysis identified overlapping themes and the discussion of specific sector defects (cystocele, rectocele, etc.), access to specialty care and alternative homeopathic therapies as three additional themes. The posts centered around women&[prime]s knowledge acquisition and symptoms to achieve either a surgical or non-surgical management resolution. Patients valued the practical advice from peers who had undergone similar surgeries. The online forums included both negative and positive perceptions regarding operation effectiveness and complications. Similar contradictory perceptions existed for non-surgical management, regardless of level of evidence. Additionally, many behavioral recommendations were given that are not supported in medical literature, such as having a &[Prime]well-women posture&[Prime] and avoidance of certain recreational outdoor activities. Other women felt they had not received appropriate counseling regarding birth trauma.
Conclusions: This ethnographic analysis of social media interactions demonstrated that women need additional information to reach a decision regarding surgical management and have knowledge concerns about the repair of various sector defects.
Source of Funding: A pilot grant from NIDDK Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium.