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JU INSIGHT: Experiences of Women With Interstitial Cystitis/Bladder Pain Syndrome: What Can We Learn From Women’s Online Discussions?

By: Gabriela Gonzalez, MD, MPH; Kristina Vaculik, MPH; Carine Khalil, PhD; Yuliya Zektser, MD; Corey W. Arnold, PhD; Christopher V. Almario, MD, MSHPM; Brennan M. R. Spiegel, MD, MSHS; Jennifer T. Anger, MD, MPH | Posted on: 17 Jan 2023

Gonzalez G, Vaculik K, Khalil C, et al. Experiences of women with interstitial cystitis/bladder pain syndrome: what can we learn from women’s online discussions? J Urol. 2023;209(1):208-215.

Figure. Relationships between thematic categories. HRQOL indicates health-related quality of life; IC/BPS, interstitial cystitis/bladder pain syndrome.

Study Need and Importance

Interstitial cystitis/bladder pain syndrome (IC/BPS) causes significantly reduced health-related quality of life. Furthermore, a subset of IC/BPS patients suffer from nonurological associated syndromes (NUAS), such as chronic fatigue syndrome, migraines, and fibromyalgia, resulting in worse quality of life. Prior qualitative studies of women recruited from specialty centers identified effects of IC/BPS on sleep, mental health, and physical and sexual health. However, these studies have focused on patients with access to care. This study aimed to capture women’s experience with IC/BPS using digital ethnography, a novel method of analyzing anonymous online discussions.

What We Found

The data mining process identified 6,842 posts by 3,902 online users. Analysis using inductive coding and a Latent Dirichlet Allocation topic modeling process identified 6 thematic categories represented in the conceptual model (see Figure). The Latent Dirichlet Allocation findings validated the debilitating nature of concomitant NUAS, which has not been captured in prior qualitative studies. Online forums allowed patients to share information such as homeopathy use despite the low supporting clinical evidence. There were significant knowledge gaps identified. For example, the diagnostic criteria for IC/BPS was frequently debated.

Limitations

Due to the analysis of anonymous posts, online users’ demographic information was unavailable, and the accuracy of IC/BPS diagnoses was not certain. The findings are limited by the level of engagement of forum participants, and the posts reviewed may be more representative of patients with more severe symptoms or those dissatisfied with their medical care.

Interpretation for Patient Care

Despite the available IC/BPS AUA guideline, diagnosis and treatment options are confusing for patients with IC/BPS. Online forums are widely utilized by women with IC/BPS to supplement their knowledge gaps and provide emotional support. Identifying patients with concomitant NUAS may help us to take a more systemic approach to managing symptoms and flares.

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