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: Women&[prime]s experience with overactive bladder (OAB) has been previously characterized with focus groups and online surveys designed from the perspective of medical providers. Learning directly from patients with a large-scale online community-based research analysis of anonymous online posts, we attempted to understand women&[prime]s experience with OAB.
Methods: We collected 2,618 posts from 203 social media sites utilizing keywords as search terms with a Java-based natural language processing platform and Treato, a social media data mining service. 200 hundred randomized posts were analyzed using grounded theory methodology to identify preliminary themes. To complement the qualitative analysis and validate a new computational technique, we concurrently applied Latent Dirichlet Allocation (LDA) probabilistic topic modeling to the full dataset for theme discovery in the entirety of the posts.
Results: Six preliminary themes with sub-themes were identified (Table 1). Overall, we found that social media creates a community that women trust more than medical providers. Online forums create a dynamic source of information, encouragement, and peers that are available to validate symptoms, feelings, treatments, and alternative therapies. Despite the spectrum and chronicity of OAB, women are attempting to find a remedy, and it is evident that there is confusion about the different tiers in treatment. Additionally, there was a desire for knowledge acquisition regarding the work-up to differentiate OAB from interstitial cystitis. The distrust in physicians, alleged mismanagement and inability of proper specialty care referral resulted in a cycle of desperation that only worsened their quality of life and emotional burdens. Noteworthy emotional challenges included suicidality, depression, and anxiety.
Conclusions: These social networks allowed patients to self-manage their illness experience and knowledge concerns through peer advice. Focusing efforts on leveraging social media technology for better decision making among patients can lead to the improvement of patient outcomes and treatment satisfaction. Furthermore, the confusion among participants in the analyzed posts suggests that providers should better counsel patients on the OAB chronic care treatment model.
Source of Funding: A pilot grant from NIDDK Prevention of Lower Urinary Tract Symptoms (PLUS) Research Consortium.