Interstitial Cystitis Chat: Evaluating Bladder Instillation Perspectives Online

Poster Presenter(s)

Ryan Wong, B.S. (he/him/his)

Medical Student
Nova Southeastern College of Osteopathic Medicine
Fort Lauderdale, Florida, United States

Co-Author(s)

LL

Leslie Claire Licari, MD

Research Fellow
Rush University Medical Center
Chicago, Illinois, United States
EB

Eugenio Bologna, MD

Research Fellow
Rush Medical Center
Chicago, Illinois, United States
SA

Sarah Adelstein, MD

Assistant Professor
Rush University
Chicago, Illinois, United States

Objectives: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a debilitating condition impairing quality of life. Current guideline-based treatments have mixed evidence of efficacy. Bladder instillation (BI) is a minimally invasive second-line therapy for IC/BPS. We aim to qualitatively examine women's thoughts and experiences about BI through anonymous Reddit discussions.

Methods: “r/interstitialcystitis”, a subreddit with >23,000 users, was queried for posts by female users about BI between 2022 and 2023. Three independent researchers read and coded relevant threads. Data was qualitatively analyzed using Charmaz’s principles of grounded theory. Instead of testing a predefined hypothesis, grounded theory recognizes a research context and provides the groundwork for subsequent research. Initially, preliminary themes were identified. These themes were then refined and used to derive emergent concepts.

Results: Qualitative thematic analysis of 63 posts with 637 responses yielded four unique preliminary themes: (1) limited treatment options for IC/BPS pain, (2) IC/BPS anxiety and depression, (3) BI ineffectiveness for IC/BPS pain, (4) exhausting all IC/BPS treatment options before BI. Three emergent concepts were derived: (1) a prevailing sense of desperation for relief among women with IC/BPS, (2) women experience fear and apprehension regarding BI, (3) a perception of BI as the final recourse for women suffering from IC/BPS. Representative quotes are summarized in Table 1.

Conclusions: This qualitative analysis of online discussions reveals that women with IC/BPS struggle with fear and desperation in trying to access effective treatment. They harbor considerable anxiety about BI, and view it as their last option. These findings suggest a need for improved patient communication and IC/BPS support from providers. Future clinical studies are warranted in elucidating BI cocktail specific efficacy and its impact on mental health outcomes.