Sentiments of Individuals with Interstitial Cystitis/Bladder Pain Syndrome Toward Pentosan Polysulfate Sodium: Infodemiology Study.

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 individuals' quality of life, affecting their mental, physical, sexual, and financial well-being. Individuals sometimes rely on peer-to-peer support to understand the disease and find methods of alleviating symptoms. The only US Food and Drug Administration-approved medication to treat IC/BPS is pentosan polysulfate sodium (PPS). However, ocular pigmentary maculopathy has been described in some individuals, 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 (1) sentiments of individuals with IC/BPS toward PPS and (2) topics discussed by individuals with IC/BPS in conjunction with PPS through use of an internet peer-to-peer forum.

Methods: Data were collected from Inspire-an anonymous web-based 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. Words with the highest probability were ranked to categorize each topic, and authors manually investigated and labeled discussions.

Results: There were 354 forum posts related to PPS. Topic modeling with latent Dirichlet allocation revealed 5 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 (4.28, 14.29%). The topic "ineffectiveness or discontinued use" was most frequently discussed. This topic also had the highest percentage of negative posts (52/152, 34.21%). However, the average compound score was within the neutral compound score range (-0.094, SD 0.625). In addition, forum data highlighted individuals' acknowledgment of the efficacy of PPS in improving their quality of life, with statements such as "saved my sanity" being representative. The overall compound individuals' sentiment toward PPS was -0.083, split across 32.49% (115/354) negative, 22.03% (78/354) positive, and 45.48% (161/354) neutral sentiment categories.

Conclusions: The overall authentic sentiment toward PPS is broad but balances to neutral. This neutral sentiment suggests that while some individuals express concerns about the side effects and long-term risks associated with PPS, others appreciate its positive impact on their quality of life. This research confirms that individuals with IC/BPS actively engage with health forums like Inspire to seek information, share their experiences, and explore different treatment options. As IC/BPS remains a complex syndrome, this study highlights the value of patient-led discussions in informing treatment decisions. Furthermore, these findings suggest that health care providers might benefit from considering the insights shared on peer-to-peer forums to better understand individual preferences, concerns, and expectations.