JMIR Publications

ABSTRACT

Background:

Interstitial cystitis/bladder pain syndrome (IC/BPS) is a complex, chronic condition affecting the urinary bladder. Symptoms commonly associated with IC/BPS include painful urination, pain during intercourse, a persistent or recurrent sensation of bladder discomfort or pressure that often worsens as the bladder fills and eases after urination, urgency, frequent urination with little warning, nighttime urination disrupting sleep, and burning or other unusual urinary sensations. These symptoms can profoundly impact emotional and mental health, hinder participation in daily activities, disrupt social interactions, and strain personal relationships.

Objective:

This study aimed to compare the experiences of different races and ethnicities with interstitial cystitis/bladder pain syndrome (IC/BPS) regarding symptoms, diagnosis, treatment status, and treatment methods. We hypothesized that there would be differences in racial and ethnic minority groups.

Methods:

We conducted a web survey of IC/BPS symptomatology, diagnosis, and treatment between June and August 2022. Bivariate analyses, including Fisher’s exact and median tests, compared variables across race/ethnicity groups. Multivariable logistic regression analyses were used to assess the influence of race/ethnicity on the IC/BPS diagnosis status and treatment outcomes.

Results:

Among respondents self-reporting IC/BPS and ever having symptoms (N = 1,631), those in minority/multiple-race groups were less likely to have had a formal diagnosis compared to White persons. Age and female gender were positive predictors for a diagnosis. White respondents were significantly more likely to report having used self-care behavioral and non-pharmacological treatments to manage their IC/BPS compared to minority/multiple-race respondents, as were non-Hispanic compared to Hispanic respondents. Several of the observed disparities in reported treatment rates appear to be driven by differences in diagnosis rates.

Conclusions:

Minority/multiple-race participants were significantly less likely to have ever been diagnosed with IC/BPS by a healthcare professional, and those who were not diagnosed with IC/BPS were less likely to have used self-care behavioral and non-pharmacological treatments for their symptoms. Streamlining the diagnostic process and public health awareness campaigns outlining treatment options may help individuals manage IC/BPS symptoms.