(B-173) Prevalence of Symptoms among Self-Reported Interstitial Cystitis Patients: A Longitudinal Study Leveraging an Integrated Database

Background: Interstitial cystitis/bladder pain syndrome (IC/BPS) is a chronic pelvic pain syndrome that impacts an estimated 10 million patients in the United States. IC/BPS is a debilitating condition that remains a clinical challenge because of unknown etiology and lack of adequate therapy. Previous studies that have investigated comorbid conditions impacting patients with IC report a high prevalence of depression, panic disorder, vulvodynia, and anxiety disorders.

Objectives: This study aims to monitor the symptoms and severity of IC/BPS over 12 months for individuals diagnosed with IC, compared to those without the diagnosis.

Methods: A year-long monthly survey of US-based Inspire.com members focused on those aged over 18 with self-reported IC and/or BPS diagnoses. Respondents participated in a 10-minute online survey for the first month, followed by a 5-minute survey for the remaining months for one year. Respondents’ medical and pharmacy claims were made available via privacy-preserving tokenization linkage. Primary outcomes measured each month, over one year were symptoms and their severity, impact of IC on daily life, and demographics.

Results: In total 408 respondents participated, with 404 respondents in the first month and 220 respondents in the twelfth month. Most were white (89.5%) and female (92%). Over half (n=229, 56.1%) had claims data, of which 113 had the ICD-10 diagnosis code for IC (N30.1). Common challenges were: 73% with sleep disturbance, 69% with issues accessing restrooms, and 60% had low sexual intimacy. Those with IC diagnosis code (N=113) reported significantly higher severity of dysuria [Med (IQR): 3 (2-4) vs. 2 (2-4), p< 0.001], urinary frequency [Med (IQR): 3 (2-4) vs. 2 (2-4), p< 0.001], urinary urgency [Med (IQR): 3 (2-4) vs. 2 (2-4), p< 0.001], and nocturia [Med (IQR): 1 (1-4) vs. 1 (1-0), p< 0.001] compared to those without the diagnosis (N=116). A diagnosis of depression or anxiety was more common among those with an IC diagnosis (67% vs. 33%, p=0.0009).

Conclusions: The study leverages claims data to confirm patient-reported diagnosis for a condition that is prone to under or misdiagnosis. Self-reported patients validated with an IC diagnosis code reported more severe symptoms. Those without an IC diagnosis code reported less severe painful urination, increased urinary frequency, and urgency. Updated, patient-centered approaches are warranted to a more holistic QoL assessment tool for IC that integrates factors including sleep issues, restroom access, and sexual intimacy.