Interstitial Cystitis/Bladder Pain Syndrome (IC/BPS) is a debilitating chronic condition that disproportionately affects women at a ratio 5:1. We sought to capture women's experiences with IC/BPS by conducting a large-scale digital ethnographic analysis of anonymous posts on internet forums.
Online posts were identified using condition-specific keywords and data mining extraction services. Once posts were identified, a random sample of 200 online posts were coded and analyzed by hand using qualitative methods. A Latent Dirichlet Allocation (LDA) probabilistic topic model was applied to the complete dataset to substantiate the qualitative analysis and allow for further thematic discovery.
A total of 6,842 posts written by 3,902 unique users from 224 websites were identified. There was a significant overlap between the hand coding and LDA themes. Our analysis yielded the following themes: online community engagement, triggers and disease etiologies, medical co-morbidities, quality of life impact, patient experience with medical care, and alternative therapies and self-management strategies. Additionally, our population appeared to have a high burden of non-urological associated syndromes (NUAS). We identified barriers to patient-centered care and found that online peer support was important for women.
Our digital ethnographic analysis is a novel application of qualitative methods using online sources. Social media analytics appears to capture a broader patient population than that typically included in clinic-based qualitative studies, such as patient interviews and focus groups. Understanding patient behaviors and concerns are important to guide strategies for improving care and the overall experience with this difficult-to-treat condition.
The Journal of urology. 2022 Sep 08 [Epub ahead of print]
Gabriela Gonzalez, Kristina Vaculik, Carine Khalil, Yuliya Zektser, Corey W Arnold, Christopher V Almario, Brennan M R Spiegel, Jennifer T Anger
Department of Urology, University of California, Davis School of Medicine, Sacramento, California., Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), Los Angeles, California., David Geffen School of Medicine at University of California, Los Angeles, California., Department of Urology, University of California, San Diego, California.