JMIR Publications

ABSTRACT

Background:

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a multifactorial, chronic syndrome involving urinary frequency, urgency, and bladder discomfort. These IC/BPS symptoms can significantly impact patients’ quality of life, affecting their mental, physical, sexual, and financial well-being. Patients sometimes rely on peer-to-peer support to understand the disease and find methods of alleviating symptoms. The only FDA-approved medication to treat IC/BPS is Pentosan polysulfate sodium (PPS). However, ocular pigmentary maculopathy has been described in some patients, with greater severity associated with prolonged PPS exposure.

Objective:

While prior research has separately assessed the benefits and side effects of PPS, this study sought to identify IC/BPS patients’ 1) sentiment towards PPS and 2) topics discussed in conjunction with PPS through use of an internet peer-to-peer forum.

Methods:

Data were collected from Inspire – an anonymous online health community where individuals gather by condition to find support and information. Sentiment analysis and percentages of negative, positive, and neutral sentiment for PPS discussions encompassing each topic was conducted using VADER (Valence Aware Dictionary for sEntiment Reasoning). Topic modeling was conducted using Latent Dirichlet Allocation (LDA). Words with the highest probability were ranked to categorize each topic, and authors manually investigated and labeled patient discussions.

Results:

The overall compound patients’ sentiment towards PPS was -0.083, split across 32.48% negative, 22.03% positive, and 45.58% neutral sentiment categories. Topic modeling with LDA revealed five topic categories: “ineffectiveness or discontinued use”, “alternative treatments”, “personal treatment suggestions based on experience”, “severe side effects”, and “risk of long-term use.” Topics related to “severe side effects” and “risk of long-term use” garnered less discussion, with the former also having the lowest positive sentiment. Additionally, forum data highlighted patients’ acknowledgment of the efficacy of PPS in improving their quality of life, with statements such as “saved my sanity” being representative.

Conclusions:

The overall authentic patient sentiment towards PPS is broad but balances to neutral, despite a possible adverse side effect of pigmentary maculopathy. This research confirms individuals with IC/BPS engage with health forums like Inspire to gain information about their condition, including available medications and treatment options, which may be especially relevant for a condition with limited treatment options. These findings imply that increasing awareness of treatments for IC/BPS could be advantageous.