RFA-DP-24-031: Longitudinal Follow-up of a Nationwide Multiethnic Cohort of Veterans and Non-Veterans with Interstitial Cystitis

ABSTRACT Interstitial cystitis/bladder pain syndrome (IC) is characterized by pain related to the bladder, usually with frequency and urgency, in the absence of other diseases that could cause these symptoms. Given the difficulty in diagnosing IC, the US prevalence of IC was unknown until recently. With funding from the Centers for Disease Control and Prevention (CDC), we p r e v i o u s l y determined the national prevalence of IC by creating a nationwide cohort of IC patients using the largest integrated health system in the US: The Veterans Affairs (VA) Health system. After a detailed chart review of nearly 3,000 subjects, adjusting our findings based upon age and gender strata to the US general population, we found the national prevalence of IC to be 1.08% in women and 0.66% in men. However, key unanswered questions remain: What is the natural history of IC? Can we predict a diagnosis of IC with a urinary biomarker? What are typical IC treatment patterns? Is there variation in care and do these patterns of care affect IC progression and remission? What is the relationship between IC and other comorbidities such as depression and post-traumatic stress disorder? Do health disparities in IC outcomes exist by race/ethnicity, gender, geography (urban/rural), and socioeconomic status? Funded by our current CDC award, we aimed to address these questions by creating a prospective cohort of 378 subjects who have IC by ICD-9 codes, further confirmed by chart review, and followed subjects annually via validated questionnaires. By following our nationwide cohort of IC subjects and two additional clinical cohorts, we hypothesize we can gain greater understanding of IC treatment patterns, clinical outcomes, and the impact on quality of life (QoL). We propose to expand our prospective cohort of 378 VA patients to 500, adding additional cohorts at UCSD (200 patients) and Kansas University (100 patients). Patients will be contacted yearly to complete validated QoL surveys, 24-hr food recalls, and Fitbit activity trackers. We will also capture additional symptom flares and follow the cohort for the development or worsening of comorbid conditions (PTSD and depression). We will measure disparities in care and outcomes, and lastly, we will validate a set of previously tested urine biomarkers. Finally, we propose to continue the very productive partnership we’ve established with the IC Network (ICN). The ICN will continue to educate the larger IC community and provide a forum for disseminating our research findings. This study will make major strides in our understanding of IC and ultimately improve QoL for IC patients.