Interstitial cystitis (IC) is characterized by chronic and debilitating bladder pain, usually accompanied by urinary frequency and urgency. Because research has been hampered by the lack of a clear and well accepted case definition, little is known about the prevalence of 1C in the population, the full burden of disease for IC patients, the kinds of care they seek, and the kinds of treatment they receive. At present, there is no standardized questionnaire for patient screening or epidemiological studies. The lack of information about IC makes it difficult to meet patients' needs for medical and non-medical care. In the proposed research, therefore, we will establish (1) a case definition of IC in women for patient screening or epidemiological studies using a Delphi panel of experts in IC and diseases with similar symptoms; (2) develop and validate a symptom questionnaire that can be used to identify female IC patients and distinguish them from those with similar conditions (e.g., overactive bladder, urinary tract infection, and endometriosis); (3) develop an IC-specific measure of self-reported functional status, including physical, mental, social, sexual/relationship, role functioning and other factors identified by IC patients as important; (4) survey more than 300,000 women for urinary symptoms and, using the validated symptom questionnaire, screen more than 23,000 to estimate prevalence of IC in the United States and provide a sample of 354 women over age 18 who fit the case definition for IC and 300 who have IC-like symptoms; (5) describe the impact of IC on patient's lives, including IC-specific functional status and the impact of IC on quality of life, mental and physical health, stress and coping, social support, sexual functioning, social functioning, labor force participation and income, as well as utilization of traditional and alternative care and compare these results with existing data on disease burden for other chronic diseases.

Agency
National Institute of Health (NIH)
Institute
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Type
Research Project--Cooperative Agreements (U01)
Project #
1U01DK070234-01
Application #
6877483
Study Section
Special Emphasis Panel (ZDK1-GRB-8 (O3))
Program Officer
Eggers, Paul Wayne
Project Start
2004-09-25
Project End
2009-08-31
Budget Start
2004-09-25
Budget End
2005-08-31
Support Year
1
Fiscal Year
2004
Total Cost
$944,269
Indirect Cost
Name
Rand Corporation
Department
Type
DUNS #
006914071
City
Santa Monica
State
CA
Country
United States
Zip Code
90401
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Beckett, Megan K; Elliott, Marc N; Clemens, J Quentin et al. (2014) Consequences of interstitial cystitis/bladder pain symptoms on women's work participation and income: results from a national household sample. J Urol 191:83-8
Suskind, Anne M; Berry, Sandra H; Suttorp, Marika J et al. (2014) Symptom persistence in a community cohort of women with interstitial cystitis/bladder pain syndrome (IC/BPS): 3-, 6-, 9-, and 12-month follow-up from the RICE cohort. Int Urogynecol J 25:1639-43
Suskind, Anne M; Berry, Sandra H; Ewing, Brett A et al. (2013) 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 male study. J Urol 189:141-5
Suskind, Anne M; Berry, Sandra H; Suttorp, Marika J et al. (2013) Health-related quality of life in patients with interstitial cystitis/bladder pain syndrome and frequently associated comorbidities. Qual Life Res 22:1537-41
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Bogart, Laura M; Suttorp, Marika J; Elliott, Marc N et al. (2012) Validation of a quality-of-life scale for women with bladder pain syndrome/interstitial cystitis. Qual Life Res 21:1665-70
Clemens, J Quentin; Elliott, Marc N; Suttorp, Marika et al. (2012) Temporal ordering of interstitial cystitis/bladder pain syndrome and non-bladder conditions. Urology 80:1227-31
Konkle, Katy S; Berry, Sandra H; Elliott, Marc N et al. (2012) Comparison of an interstitial cystitis/bladder pain syndrome clinical cohort with symptomatic community women from the RAND Interstitial Cystitis Epidemiology study. J Urol 187:508-12
Clemens, J Quentin; Bogart, Laura M; Liu, Karin et al. (2011) Perceptions of ""urgency"" in women with interstitial cystitis/bladder pain syndrome or overactive bladder. Neurourol Urodyn 30:402-5

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