Development, Validation and Testing of an Epidemiological Case Definition of Interstitial Cystitis/painful Bladder Syndrome
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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.
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Sutherland S, Kelly A, McKernan L, Dmochowski R, Stuart Reynolds W, Sebesta E Neurourol Urodyn. 2024; 43(8):1895-1902.
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Westropp J, Stella J, Buffington C Front Pain Res (Lausanne). 2024; 5:1405488.
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Kelly A, Jones K, Pineau O, Nickel J, Rose J, Moldwin R Can Urol Assoc J. 2024; 18(6):194-200.
PMID: 38381928 PMC: 11230695. DOI: 10.5489/cuaj.8686.
Ackerman A, Jackson N, Caron A, Kaufman M, Routh J, Lowder J Sci Rep. 2023; 13(1):18412.
PMID: 37891217 PMC: 10611808. DOI: 10.1038/s41598-023-44862-5.
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Li J, Yi X, Ai J Int J Mol Sci. 2022; 23(23).
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