Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States

Abstract

Purpose Bladder pain syndrome/interstitial cystitis is a poorly understood condition that can cause serious disability. We provide the first population based symptom prevalence estimate to our knowledge among United States adult females. Materials and Methods We developed and validated 2 case definitions to identify bladder pain syndrome/interstitial cystitis symptoms. Beginning in August 2007 we telephoned United States households, seeking adult women with bladder symptoms or a bladder pain syndrome/interstitial cystitis diagnosis. Second stage screening identified those subjects who met case definition criteria. Each completed a 60-minute interview on the severity and impact of bladder symptoms, health care seeking and demographics. Data collection ended in April 2009. Using population and nonresponse weights we calculated prevalence estimates based on definitions spanning a range of sensitivity and specificity. We used United States Census counts to estimate the number of affected women in 2006. The random sample included 146,231 households, of which 131,691 included an adult female. Of these households 32,474 reported an adult female with bladder symptoms or diagnosis, of which 12,752 completed the questionnaire. Results Based on the high sensitivity definition 6.53% (95% CI 6.28, 6.79) of women met symptom criteria. Based on the high specificity definition 2.70% (95% CI 2.53, 2.86) of women met the criteria. These percentages translated into 3.3 to 7.9 million United States women 18 years old or older with bladder pain syndrome/interstitial cystitis symptoms. Symptom severity and impact were comparable to those of adult women with established diagnoses. However, only 9.7% of the women reported being assigned a bladder pain syndrome/interstitial cystitis diagnosis. Conclusions Bladder pain syndrome/interstitial cystitis symptoms are widespread among United States women and associated with considerable disability. These results suggest bladder pain syndrome/interstitial cystitis may be underdiagnosed.

Sleep Disturbances and Nocturnal Symptoms: Relationships with Quality of Life in a Population-Based Sample of Women with Interstitial Cystitis/Bladder Pain Syndrome

“…Although participants endorsed bladder symptoms consistent with an IC/BPS diagnosis, it is possible that some participants would not meet diagnostic criteria in a clinical evaluation. However, a recent paper by our group has shown that the RICE sample reports Correlations between the IC/BPS symptom summary score and IC/BPS-specific symptoms (3)(4)(5) are not reported because the correlations will necessarily be inflated, as the items comprise the summary score. ** p < 0.001. similar severity of IC/BPS symptoms as a clinical population.…”

“…For instance, in the RAND Interstitial Cystitis Epidemiology (RICE) Study (from which the current data are drawn), a nationally representative population survey, up to 6.5% of US women reported experiencing IC/BPS symptoms according to established case criteria, but less than 10% of these women had an IC/BPS diagnosis. 3 Adding to the diagnostic uncertainty is the considerable symptom overlap and comorbidity between IC/BPS and other chronic pain conditions, such as fi bromyalgia, chronic fatigue syndrome, and irritable bowel syndrome (IBS). negative influences on quality of life (QOL).…”

“…Detailed descriptions of the RICE Study methods and design are provided elsewhere. 3 To reduce screening costs for a rare population, screening was conducted in 2 stages from 2007-2009. To identify households with an adult female (age 18 or older) who had current symptoms of IC/BPS and/or had previously been diagnosed with IC/BPS for the first stage of population screening, 2 BPS/IC screening items were added to a random digit dial national probability sample weekly omnibus survey that uses standard statistical methods for selecting the sample and weighting for nonresponse.…”

“…Among those eligible for second-stage screening, 39.3% (12,752) agreed to further screening, and 82.1% (10,474) of those completed screening. Among women screened, 32.4% (3,397) met the following validated high-sensitivity RICE symptom criteria (81% sensitivity and 54% specificity) to establish caseness: (1) pain, pressure, or discomfort in pelvic area; (2) urinary frequency 10+ times/day or urgency due to pain, pressure, or discomfort (not fear of wetting, which is associated with overactive bladder); 13 (3) pain that worsens as bladder fills; (4) no resolution of bladder symptoms after antibiotic treatment; and (5) never treated with hormone injections for endometriosis.…”

The design of features for a mobile health application for the management of interstitial cystitis/painful bladder syndrome

“…Some people experience worsened symptoms with certain foods, and in females, menstruation [1]. Approximately 3.3 to 7.9 million (2.7% to 6.53%) female adults over 18 years of age [2] and 2.1 to 4.6 million male adults (1.9% to 4.2%) between 39 and 74 years of age [3] experience IC/PBS symptoms in the US. Despite the prevalence, no app exists to manage IC/PBS symptoms.…”