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1.  Consequences of Interstitial Cystitis/Bladder Pain Symptoms on Women’s Work Participation and Income: Results from a National Household Sample 
The Journal of urology  2013;191(1):83-88.
Purpose
To describe differences in work participation and income by bladder symptom impact and comorbidities among women with interstitial cystitis/bladder pain syndrome (IC/BPS).
Materials and Methods
Cross-sectional data from2767 respondents under age 65 identified with IC/BPS symptoms analyzed. The data are from the RAND Interstitial Cystitis Epidemiology (RICE) survey and include retrospective self-reports of IC/BPS impact, severity, years since onset, and related comorbidities (depressive symptomology, number of conditions), work participation and income, and personal characteristics. Multiple regressions predicted five current work outcomes: works now, kept from working by pain, missed work days, days worked when bothered by symptoms, and real income change since symptom onset.
Results
Controlling for work status at symptom onset and personal characteristics, greater bladder symptom impact predicted greater likelihood of not now working, kept more days from working by pain, missed more work days, and working more days with symptoms. More depressive symptomology and greater number of co-morbidities predicted reduced work participation. Women experienced no growth in real income since symptom onset. Measures of symptom severity were not associated with any of the economic outcomes.
Conclusions
Greater IC/BPS symptom impact, depressive symptomology, and count of comorbidities (but not symptom severity) were each associated with less work participation and leveling of women’s long-term earnings. Management of bladder symptom impact on non-work-related activities and depressive symptomology may improve women’s work outcomes.
doi:10.1016/j.juro.2013.07.018
PMCID: PMC4085039  PMID: 23872030
Interstitial cystitis/bladder pain syndrome; probability sample; employment
2.  Comparison of an Interstitial Cystitis/Bladder Pain Syndrome Clinical Cohort With Symptomatic Community Women From the RAND Interstitial Cystitis Epidemiology Study 
The Journal of urology  2011;187(2):508-512.
Purpose
The RAND Interstitial Cystitis Epidemiology survey estimated that 2.7% to 6.5% of United States women have urinary symptoms consistent with a diagnosis of interstitial cystitis/bladder pain syndrome. We describe the demographic and clinical characteristics of the symptomatic community based RAND Interstitial Cystitis Epidemiology cohort, and compare them with those of a clinically based interstitial cystitis/bladder pain syndrome cohort.
Materials and Methods
Subjects included 3,397 community women who met the criteria for the RAND Interstitial Cystitis Epidemiology high sensitivity case definition, and 277 women with an interstitial cystitis/bladder pain syndrome diagnosis recruited from specialist practices across the United States (clinical cohort). Questions focused on demographic information, symptom severity, quality of life indicators, concomitant diagnoses and treatment.
Results
Average symptom duration for both groups was approximately 14 years. Women in the clinical cohort reported worse baseline pain and maximum pain, although the absolute differences were small. Mean Interstitial Cystitis Symptom Index scores were approximately 11 for both groups, but mean Interstitial Cystitis Problem Index scores were 9.9 and 13.2 for the clinical cohort and the RAND Interstitial Cystitis Epidemiology cohort, respectively (p <0.001). The RAND Interstitial Cystitis Epidemiology subjects were more likely to be uninsured.
Conclusions
The RAND Interstitial Cystitis Epidemiology community cohort was remarkably similar to an interstitial cystitis/bladder pain syndrome clinical cohort with respect to demographics, symptoms and quality of life measures. In contrast to other chronic pain conditions for which clinical cohorts typically report worse symptoms and functional status than population based samples, our data suggest that many measures of symptom severity and functional impact are similar, and sometimes worse, in the RAND Interstitial Cystitis Epidemiology cohort. These findings suggest that interstitial cystitis/bladder pain syndrome is significantly burdensome, and likely to be underdiagnosed and undertreated in the United States.
doi:10.1016/j.juro.2011.10.040
PMCID: PMC3894739  PMID: 22177158
cystitis; interstitial; epidemiology; prevalence; questionnaires
3.  The Prevalence and Overlap of Interstitial Cystitis/Bladder Pain Syndrome and Chronic Prostatitis/Chronic Pelvic Pain Syndrome in Men; Results of the RAND Interstitial Cystitis Epidemiology (RICE) Male Study 
The Journal of urology  2012;189(1):141-145.
Purpose
As part of the RICE study, we previously developed validated case definitions to identify interstitial cystitis/bladder pain syndrome (IC/BPS) in women and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) in men. Using population-based screening methods, we applied these case definitions to determine the prevalence of these conditions in men.
Materials and Methods
A total of 6,072 households were contacted by phone to screen for men who had symptoms of IC/BPS or CP/CPPS. An initial 296 men screened positive, of which 149 met the inclusionary criteria and completed the telephone interview. For IC/BPS, two case definitions were applied (one with high sensitivity and one with high specificity), while for CP/CPPS, a single case definition (with both high sensitivity and specificity) was used. These case definitions were used to classify subjects into groups based on diagnosis.
Results
The IC/BPS weighted prevalence estimate for the high sensitivity and specificity definition was 4.2% (3.1-5.3%), and 1.9% (1.1-2.7%), respectively. The CP/CPPS weighted prevalence estimate was 1.8% (0.9-2.7%). These values equate to 1,986,972 (95% CI 966,042- 2,996,924) men with CP/CPPS and to 2,107,727 (95% CI 1,240,485 – 2,974,969) men with the high specificity definition of IC/BPS in the U.S.. The overlap between men who met either the high specificity IC/BPS case definition or the CP/CPPS case definition was 17%.
Conclusions
Symptoms of IC/BPS and CP/CPPS are widespread among men in the US.. The prevalence of IC/BPS symptoms in men approaches that in women, suggesting that this condition may be underdiagnosed and undertreated in the male population.
doi:10.1016/j.juro.2012.08.088
PMCID: PMC3894747  PMID: 23164386
interstitial cystitis; chronic prostatitis; epidemiology; men
4.  Temporal Ordering of Interstitial Cystitis/Bladder Pain Syndrome and Non-bladder Conditions 
Urology  2012;80(6):1227-1231.
Objective
To examine the prevalence and timing of nonbladder conditions in a community cohort of women with symptoms of interstitial cystitis/bladder pain syndrome (IC/BPS).
Methods
As part of the Rand Interstitial Cystitis Epidemiology (RICE) study, we identified 3397 community women who met a validated case definition for IC/BPS symptoms. Each completed a survey asking if they had a physician diagnose them as having irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, migraines, panic attacks, or depression. If a positive response was received, subjects were asked to provide the age of symptom onset. All subjects were also asked to provide the date of IC/BPS symptom onset.
Results
A total of 2185 women reported a diagnosis of at least one of the nonbladder conditions. Onset of bladder symptoms was not consistently earlier or later than the onset of nonbladder symptoms. Depression tended to occur earlier (P < .05), whereas fibromyalgia generally occurred later (P < .05). Mean age of onset was lowest for migraine symptoms, depression symptoms, and panic attacks symptoms, and greatest for fibromyalgia and chronic fatigue syndrome symptoms. Mean age of irritable bowel syndrome and IC/BPS symptom onset was between these other conditions.
Conclusion
These findings confirm the common co-occurrence of IC/BPS with chronic nonbladder conditions. In women with IC/BPS symptoms and coexistent nonbladder conditions, bladder symptoms do not uniformly predate the nonbladder symptoms. These observations suggest that phenotypic progression from isolated bladder symptoms to regional/systemic symptoms is not a predominant pattern in IC/BPS, although such a pattern may occur in a subset of individuals.
doi:10.1016/j.urology.2012.06.059
PMCID: PMC3804419  PMID: 23206765
5.  Validation of a Quality of Life Scale for Women with Bladder Pain Syndrome/Interstitial Cystitis 
Purpose
To validate a disease-specific scale to measure impact of symptoms of bladder pain syndrome/interstitial cystitis (BPS/IC), a condition that affects up to 6.5% of U.S. women.
Methods
Participants were drawn from the RAND Interstitial Cystitis Epidemiology Study (RICE), a telephone probability survey of 146,231 U.S. households. Women who met RICE BPS/IC symptom criteria (n=3,397) completed the 6 -item RAND Bladder Symptom Impact scale (RICE BSI-6). The RICE BSI-6 was adapted from a scale used to assess impact of diabetes on life and sexuality, and modified based on expert input on face validity and focus group work; items specific to diabetic symptoms were eliminated. Validated scales of symptom severity, mental-and physical -health-related QoL, depression, coping, and perceived control were used to assess convergent validity.
Results
The RICE BSI-6 (α=.92) was significantly related to greater symptom severity, worse general mental and physical health-related QoL, more severe depression symptoms, and lower perceived control over life in general and over BPS/IC symptoms (p-values<.05). It was also associated with less use of distancing coping (p<.05).
Conclusion
The RICE BSI-6 shows excellent internal consistency and strong convergent validity. It can be used to examine effects of psychosocial and treatment interventions on QoL among women with BPS/IC.
doi:10.1007/s11136-011-0085-3
PMCID: PMC3406260  PMID: 22146841
Painful Bladder Syndrome; Interstitial Cystitis; quality of life; women
6.  It's Better on TV: Does Television Set Teenagers Up for Regret Following Sexual Initiation? 
Context
Approximately two-thirds of all sexually experienced teenagers in the United States say they wish they had waited longer to have sexual intercourse for the first time. Little is known, though, about why such a large proportion of teenagers express disappointment about the timing of their initial experience with sexual intercourse.
Methods
Using data from a national longitudinal survey of adolescents (12-17 year olds followed to ages 15-20), we tested for a prospective association between exposure to sex on television and the likelihood of regret following sexual initiation, analyzed the mediating role of shifts in sex-related outcome expectancies from pre- to post-initiation, and investigated gender differences in these relationships.
Results
Among males (but not females), we found that greater exposure to sexual content on television was associated with an increased likelihood of regret following sexual initiation, an association partly explained by a downward shift in males' sex-related outcome expectancies following sexual initiation.
Conclusions
These findings, which offer insight into the contextual factors and processes that may foster initiation regret, could be important for advancing critical decision-making by youth about sexual debut.
doi:10.1363/4109209
PMCID: PMC2871774  PMID: 19493218
7.  Development, Validation and Testing of an Epidemiological Case Definition of Interstitial Cystitis/Painful Bladder Syndrome 
The Journal of urology  2010;183(5):1848-1852.
Purpose
No standard case definition exists for interstitial cystitis/painful bladder syndrome for patient screening or epidemiological studies. As part of the RAND Interstitial Cystitis Epidemiology study, we developed a case definition for interstitial cystitis/painful bladder syndrome with known sensitivity and specificity. We compared this definition with others used in interstitial cystitis/painful bladder syndrome epidemiological studies.
Materials and Methods
We reviewed the literature and performed a structured, expert panel process to arrive at an interstitial cystitis/painful bladder syndrome case definition. We developed a questionnaire to assess interstitial cystitis/painful bladder syndrome symptoms using this case definition and others used in the literature. We administered the questionnaire to 599 women with interstitial cystitis/painful bladder syndrome, overactive bladder, endometriosis or vulvodynia. The sensitivity and specificity of each definition was calculated using physician assigned diagnoses as the reference standard.
Results
No single epidemiological definition had high sensitivity and high specificity. Thus, 2 definitions were developed. One had high sensitivity (81%) and low specificity (54%), and the other had the converse (48% sensitivity and 83% specificity). These values were comparable or superior to those of other epidemiological definitions used in interstitial cystitis/painful bladder syndrome prevalence studies.
Conclusions
No single case definition of interstitial cystitis/painful bladder syndrome provides high sensitivity and high specificity to identify the condition. For prevalence studies of interstitial cystitis/painful bladder syndrome the best approach may be to use 2 definitions that would yield a prevalence range. The RAND Interstitial Cystitis Epidemiology interstitial cystitis/painful bladder syndrome case definitions, developed through structured consensus and validation, can be used for this purpose.
doi:10.1016/j.juro.2009.12.103
PMCID: PMC3519367  PMID: 20303099
urinary bladder; cystitis, interstitial; pain; epidemiology; diagnosis
8.  Prevalence of Symptoms of Bladder Pain Syndrome/Interstitial Cystitis Among Adult Females in the United States 
The Journal of urology  2011;186(2):540-544.
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.
doi:10.1016/j.juro.2011.03.132
PMCID: PMC3513327  PMID: 21683389
cystitis; interstitial; cross-sectional studies; prevalence; urinary bladder
9.  Perceptions of “Urgency” in Women With Interstitial Cystitis/Bladder Pain Syndrome or Overactive Bladder 
Neurourology and urodynamics  2010;30(3):402-405.
Purpose
To compare urgency symptoms in women with interstitial cystitis/bladder pain syndrome (IC/BPS) and overactive bladder (OAB).
Materials and Methods
Women with diagnoses of IC/BPS (n = 194) and OAB (n = 85) were recruited from the clinical practices of Urologists (n = 8) and Gynecologists (n = 16) with recognized expertise in the diagnosis and management of these conditions. Subjects completed a comprehensive telephone survey about their current symptoms. The questionnaire included 11 questions about urinary urgency. Responses were compared between the two groups.
Results
Urgency was commonly reported as a symptom by women with both conditions (81% IC/BPS and 91% OAB). Compared with IC/BPS, urgency in OAB more often resulted in leakage, and was perceived to be more of a problem. In IC/BPS, the urgency was primarily reported as due to pain, pressure, or discomfort, while in OAB the urgency was more commonly due to fear of leakage. However, approximately 40% of women with OAB also report urgency due to pain, pressure, or discomfort. Similar proportions of both groups (~60%) indicated that the urgency occurred “suddenly” instead of more gradually over a period of minutes or hours.
Conclusions
Urgency symptoms differed in women diagnosed with IC/BPS versus those diagnosed with OAB, but there was significant overlap. This suggests that “urgency” is not a well-defined and commonly understood symptom that can be utilized to clearly discriminate between IC/BPS and OAB. These findings reinforce the clinical observation that it is often challenging to differentiate between these two conditions.
doi:10.1002/nau.20974
PMCID: PMC3513332  PMID: 21412821
sensations; specificity; symptoms
10.  Suicidal ideation among patients with bladder pain syndrome/interstitial cystitis 
Urology  2012;80(2):280-285.
Objective
Bladder pain syndrome or interstitial cystitis (BPS/IC) is associated with a high rate of mental health disorders, including depression. Little is known about suicide risk in patients with BPS/IC or the characteristics of patients with BPS/IC who endorse suicidal ideation (SI). We compared respondents who endorsed SI with respondents who denied SI within a national probability sample of women with BPS/IC symptoms.
Methods
Data were collected as part of the RAND Interstitial Cystitis Epidemiology (RICE) Study, which screened 146,246 U.S. households to identify adult women who met BPS/IC symptom criteria. In addition to estimating SI prevalence, women with and without recent SI were compared based on demographics, depression symptoms, BPS/IC symptoms, functioning, and treatment utilization.
Results
Of 1,019 women with BPS/IC symptoms asked about SI, 11.0% (95% CI: 8.73–13.25) reported SI in the past 2 weeks. Those with SI were more likely to be younger, unemployed, unmarried, uninsured, less educated, and of lower income. Women who endorsed SI reported worse mental health functioning, physical health functioning, and BPS/IC symptoms. Women with SI were more likely to have received mental health treatment, but did not differ on whether they had received BPS/IC treatment. Multivariate logistic regression analyses indicated that severity of BPS/IC symptoms did not independently predict likelihood of endorsing SI.
Conclusions
Results suggest that BPS/IC severity may not increase the likelihood of SI except via severity of depression symptoms. Additional work is needed to understand how to address the increased needs of women with both BPS/IC and SI.
doi:10.1016/j.urology.2011.12.053
PMCID: PMC3411912  PMID: 22658505
suicidal ideation; interstitial cystitis; bladder pain syndrome
11.  Prevalence and Correlates of Sexual Dysfunction among Women with Bladder Pain Syndrome/Interstitial Cystitis (BPS/IC) 
Urology  2011;77(3):576-580.
Objectives
Sexual dysfunction can contribute to reduced quality of life among women with bladder pain syndrome/interstitial cystitis (BPS/IC). We examined prevalence and correlates of general and BPS/IC-specific sexual dysfunction among women in the RAND Interstitial Cystitis Epidemiology Study (RICE) based on a probability sample survey of U.S. households.
Methods
We telephoned 146,231 households to identify women who reported bladder symptoms or a BPS/IC diagnosis. Those who reported either were subject to a second-stage screening using RICE high-specificity symptom criteria (pain, pressure, or discomfort in pelvic area; daytime urinary frequency 10+ times or urgency due to pain, pressure, or discomfort (not fear of wetting); pain worsens as the bladder fills; bladder symptoms did not resolve after antibiotic treatment; and never treated with hormone injections for endometriosis). Women who met RICE criteria (n = 1,469) completed measures of BPS/IC-specific and general sexual dysfunction symptoms, bladder symptom severity, general physical health, depression, medical care-seeking, and socio-demographic characteristics.
Results
Of those with a current sexual partner (75%), 88% reported ≥1 general sexual dysfunction symptom and 90% reported ≥1 BPS/IC-specific sexual dysfunction symptom in the past 4 weeks. In multivariate models, BPS/IC-specific sexual dysfunction was significantly associated with more severe BPS/IC symptoms, younger age, worse depression symptoms, and worse perceived general health. Multivariate correlates of general sexual dysfunction included non-Latino race/ethnicity, being married, and having depression symptoms.
Conclusions
Women with BPS/IC symptoms experience very high levels of sexual dysfunction. Sexual dysfunction covaries with symptoms.
doi:10.1016/j.urology.2010.10.016
PMCID: PMC3059214  PMID: 21215432
Painful Bladder Syndrome; Interstitial Cystitis; sexual dysfunction; women
12.  Depressive Disorders and Panic Attacks in Women with Bladder Pain Syndrome/Interstitial Cystitis: A Population-Based Sample 
General hospital psychiatry  2011;33(2):143-149.
Objective
We report the population prevalence of probable depressive disorders and current panic attacks in women with bladder pain syndrome/interstitial cystitis (BPS/IC) symptoms and describe their characteristics and access care.
Method
We conducted a telephone screening of 146,231 households and phone interviews with women with BPS/IC symptoms. A weighted probability sample of 1,469 women who met criteria for BPS/IC was identified. Measures of BPS/IC severity, depressive symptoms, panic attacks, and treatment utilization were administered. T-tests and chi-square tests were run to examine differences between groups.
Results
Over one-third of the sample (N = 536) had a probable diagnosis of depression and 52% (N = 776) reported recent panic attacks. Women with a probable diagnosis of depression or current panic attacks reported worse functioning, increased pain and were less likely to work because of bladder pain.
Conclusions
In this community-based sample, rates of probable current depression and panic attacks are high and there is considerable unmet need for treatment. These findings suggest that clinicians should be alert to complaints of bladder pain in patients seeking treatment for depressive or anxiety disorders, and to complaints of emotional or personal problems in patients seeking treatment for painful bladder symptoms.
doi:10.1016/j.genhosppsych.2011.01.004
PMCID: PMC3099040  PMID: 21596207
Bladder pain syndrome/interstitial cystitis; bladder pain syndrome; depression; panic attacks; epidemiology
13.  A Probability Sample for Monitoring the HIV-infected Population in Care in the U.S. and in Selected States 
The Open AIDS Journal  2012;6:67-76.
Epidemiologic and clinical changes in the HIV epidemic over time have presented a challenge to public health surveillance to monitor behavioral and clinical factors that affect disease progression and HIV transmission. The Medical Monitoring Project (MMP) is a supplemental surveillance project designed to provide representative, population-based data on clinical status, care, outcomes, and behaviors of HIV-infected persons receiving care at the national level. We describe a three-stage probability sampling method that provides both nationally and state-level representative estimates.
In stage-I, 20 states, which included 6 separately funded cities/counties, were selected using probability proportional to size (PPS) sampling. PPS sampling was also used in stage-II to select facilities for participation in each of the 26 funded areas. In stage-III, patients were randomly selected from sampled facilities in a manner that maximized the possibility of having overall equal selection probabilities for every patient in the state or city/county. The sampling methods for MMP could be adapted to other research projects at national or sub-national levels to monitor populations of interest or evaluate outcomes and care for a range of specific diseases or conditions.
doi:10.2174/1874613601206010067
PMCID: PMC3462615  PMID: 23049655
HIV; sampling; representative; surveillance.
14.  Simultaneous Recruitment of Drug Users and Men Who Have Sex with Men in the United States and Russia Using Respondent-Driven Sampling: Sampling Methods and Implications 
The Sexual Acquisition and Transmission of HIV Cooperative Agreement Program (SATHCAP) examined the role of drug use in the sexual transmission of the human immunodeficiency virus (HIV) from traditional high-risk groups, such as men who have sex with men (MSM) and drug users (DU), to lower risk groups in three US cities and in St. Petersburg, Russia. SATHCAP employed respondent-driven sampling (RDS) and a dual high-risk group sampling approach that relied on peer recruitment for a combined, overlapping sample of MSM and DU. The goal of the sampling approach was to recruit an RDS sample of MSM, DU, and individuals who were both MSM and DU (MSM/DU), as well as a sample of sex partners of MSM, DU, and MSM/DU and sex partners of sex partners. The approach efficiently yielded a sample of 8,355 participants, including sex partners, across all four sites. At the US sites—Los Angeles, Chicago, and Raleigh–Durham—the sample consisted of older (mean age = 41 years), primarily black MSM and DU (both injecting and non-injecting); in St. Petersburg, the sample consisted of primarily younger (mean age = 28 years) MSM and DU (injecting). The US sites recruited a large proportion of men who have sex with men and with women, an important group with high potential for establishing a generalized HIV epidemic involving women. The advantage of using the dual high-risk group approach and RDS was, for the most part, the large, efficiently recruited samples of MSM, DU, and MSM/DU. The disadvantages were a recruitment bias by race/ethnicity and income status (at the US sites) and under-enrollment of MSM samples because of short recruitment chains (at the Russian site).
doi:10.1007/s11524-009-9365-4
PMCID: PMC2705484  PMID: 19472058
Respondent-driven sampling; HIV; MSM; MSMW; DU; IDU; SATHCAP

Results 1-14 (14)