Demographic Differences and Disparities in the Misdiagnosis of Interstitial Cystitis/Bladder Pain Syndrome in a National Cohort of VA Patients



      To explore association between misdiagnosis of IC/BPS and demographics. Interstitial cystitis/bladder pain syndrome (IC/BPS) is associated with significant diagnostic uncertainty, resulting in frequent misdiagnosis as there is little known about the potential impact of key demographic factors.


      All patients in the VA system between 1999-2016 were identified by ICD-9/10 codes for IC/BPS (595.1/N30.10) (n = 9,503). ICD code accuracy for true IC/BPS (by strict criteria) was assessed by in-depth chart abstraction (n = 2,400). Associations were explored between rates of misdiagnosis and demographics.


      IC/BPS criteria were met in only 651 (48.8%) of the 1,334 charts with an ICD code for IC/BPS reviewed in depth. There were no differences in the misdiagnosis rate by race (P=.27) or by ethnicity (P=.97), after adjusting for differences in age and gender. In IC/BPS-confirmed cases, female patients were diagnosed at a younger age than males (41.9 vs. 58.2 years, P<.001). Black and Hispanic patients were diagnosed at a younger age compared to White (41.9 vs. 50.2 years, P<.001) and non-Hispanic patients, respectively (41.1 vs. 49.1 years, P=.002).


      There was a high rate of misdiagnosis of IC/BPS overall, with only 48.8% of patients with an ICD code for IC/BPS meeting diagnostic criteria. There were no significant associations between diagnostic accuracy and race/ethnicity. Black and Hispanic patients were more likely to receive a diagnosis of IC/BPS at a younger age, suggesting there may be differing natural histories or presentation patterns of IC/BPS between racial/ethnic groups.
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        • Hanno P
        • Keay S
        • Moldwin R
        • Van Ophoven A.
        International consultation on IC - Rome, September 2004/forging an international consensus: progress in painful bladder syndrome/interstitial cystitis. report and abstracts.
        Int Urogynecol J Pelvic Floor Dysfunct. 2005; 16 (PMID: 15883858): S2-S34
        • Hanno P
        • Levin RM
        • Monson FC
        • et al.
        Diagnosis of interstitial cystitis.
        J Urol. 1990; 143 (PMID: 2299717): 278-281
        • Ness TJ
        • Powell-Boone T
        • Cannon R
        • Lloyd LK
        • Fillingim RB.
        Psychophysical evidence of hypersensitivity in subjects with interstitial cystitis.
        J Urol. 2005; 173 (PMID: 15879797): 1983-1987
        • Nordling J
        • Anjum FH
        • Bade JJ
        • et al.
        Primary evaluation of patients suspected of having interstitial cystitis (IC).
        Eur Urol. 2004 May; 45 (PMID: 15082211): 662-669
        • Warren JW
        • Keay SK.
        Interstitial cystitis.
        Curr Opin Urol. 2002; 12 (PMID: 11753137): 69-74
        • Anger JT
        • Zabihi N
        • Clemens JQ
        • Payne CK
        • Saigal CS
        • Rodriguez LV.
        Treatment choice, duration, and cost in patients with interstitial cystitis and painful bladder syndrome.
        Int Urogynecol J. 2011; 22 (Epub 2010 Sep 2. PMID: 20811877): 395-400
        • Clemens JQ
        • Meenan RT
        • Rosetti MC
        • Gao SY
        • Calhoun EA.
        Prevalence and incidence of interstitial cystitis in a managed care population.
        J Urol. 2005; 173 (discussion 102PMID: 15592041): 98-102
        • Clemens JQ
        • Wise M.
        Interstitial cystitis and painful bladder syndrome.
        Urologic Diseases in America. (US Department of Health and Human Services. Public Health Service, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Disease, 2007
        • Saigal CS
        • Liu H
        • Hanley JM
        • et al.
        Chapter 15: Methods.
        Urologic Diseases in America. US Department of Health and Human Services, Public Health Service, National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases. 2012; (NIH Publication No. 12-7865 [pp. 497-522])
        • Zogg CK
        • Olufajo OA
        • Jiang W
        • et al.
        The need to consider longer-term outcomes of care: racial/ethnic disparities among adult and older adult emergency general surgery patients at 30, 90, and 180 days.
        Ann Surg. 2017; 266 (PMID: 28140382): 66-75
        • Gahagan JV
        • Hanna MH
        • Whealon MD
        • et al.
        Racial disparities in access and outcomes of cholecystectomy in the United States.
        Am Surg. 2016; 82 (PMID: 27779974): 921-925
        • Rangrass G
        • Ghaferi AA
        • Dimick JB.
        Explaining racial disparities in outcomes after cardiac surgery: the role of hospital quality.
        JAMA Surg. 2014; 149 (PMID: 24402245): 223-227
        • Akinyemiju TF
        • Vin-Raviv N
        • Chavez-Yenter D
        • Zhao X
        • Budhwani H.
        Race/ethnicity and socio-economic differences in breast cancer surgery outcomes.
        Cancer Epidemiol. 2015; 39 (Epub 2015 Jul 29. PMID: 26231096): 745-751
      1. Kaye DR, Canner JK, Kates M, Schoenberg MP, Bivalacqua TJ. Do African American patients treated with radical cystectomy for bladdercancer have worse overall survival? Accounting for pathologic staging and patient demographics beyond race makes a difference. bladder cancer. 2016;2:225-234. doi:10.3233/BLC-150041. PMID: 27376141.

        • Alexander DD
        • Waterbor J
        • Hughes T
        • Funkhouser E
        • Grizzle W
        • Manne U.
        African-American and Caucasian disparities in colorectal cancer mortality and survival by data source: an epidemiologic review.
        Cancer Biomark. 2007; 3 (PMID: 18048968): 301-313
        • Barocas DA
        • Alvarez J
        • Koyama T
        • Anderson CB
        • Gray DT
        • Fowke JH
        • et al.
        Racial variation in the quality of surgical care for bladder cancer.
        Cancer. 2014; 120 (Epub 2013 Dec 11. PMID: 24339051): 1018-1025
        • Le H
        • Ziogas A
        • Lipkin SM
        • Zell JA.
        Effects of socioeconomic status and treatment disparities in colorectal cancer survival.
        Cancer Epidemiol Biomarkers Prev. 2008; 17 (PMID: 18708384): 1950-1962
        • Rhoads KF
        • Ackerson LK
        • Jha AK
        • Dudley RA.
        Quality of colon cancer outcomes in hospitals with a high percentage of Medicaid patients.
        J Am Coll Surg. 2008; 207: 197-204
        • Dallas KB
        • Sohlberg EM
        • Elliott CS
        • Rogo-Gupta L
        • Enemchukwu E.
        Racial and socioeconomic disparities in short-term urethral sling surgical outcomes.
        Urology. 2017; 110: 70-75
        • Brubaker WD
        • Dallas KB
        • Elliott CS
        • et al.
        Payer type, race/ethnicity, and the timing of surgical management of urinary stone disease.
        J Endourol. 2019; 33: 152-158
        • Ferdinand DP
        • Nedunchezhian S
        • Ferdinand KC.
        Hypertension in African Americans: advances in community outreach and public health approaches.
        Prog Cardiovasc Dis. 2020; 63: 40-45
        • Meng YY
        • Diamant A
        • Jones J
        • et al.
        Racial and ethnic disparities in diabetes care and impact of vendor-based disease management programs.
        Diabetes Care. 2016; 39: 743-749
        • Berry SH
        • Elliott MN
        • Suttorp M
        • et al.
        Prevalence of symptoms of bladder pain syndrome/interstitial cystitis among adult females in the United States.
        J Urol. 2011; 186 (Epub 2011 Jun 16. PMID: 21683389): 540-544
        • Suskind AM
        • Berry SH
        • Ewing BA
        • Elliott MN
        • Suttorp MJ
        • Clemens JQ.
        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. 2013; 189 (Epub 2012 Nov 16. PMID: 23164386): 141-145
        • Link CL
        • Pulliam SJ
        • Hanno PM
        • et al.
        Prevalence and psychosocial correlates of symptoms suggestive of painful bladder syndrome: results from the Boston area community health survey.
        J Urol. 2008; 180 (Epub 2008 Jun 12. PMID: 18554658): 599-606
        • Clemens JQ
        • Link CL
        • Eggers PW
        • et al.
        Prevalence of painful bladder symptoms and effect on quality of life in black, Hispanic and white men and women.
        J Urol. 2007; 177: 1390-1394
        • Skove SL
        • Howard LE
        • Senechal J
        • et al.
        The misdiagnosis of interstitial cystitis/bladder pain syndrome in a VA population.
        Neurourol Urodyn. 2019; 38 (Epub 2019 Jul 14. PMID: 31302944): 1966-1972
        • Antonelli J
        • Jones LW
        • Bañez LL
        • et al.
        Exercise and prostate cancer risk in a cohort of veterans undergoing prostate needle biopsy.
        J Urol. 2009; 182: 2226-2231
        • Keating NL
        • O'Malley AJ
        • Freedland SJ
        • Smith MR
        Diabetes and cardiovascular disease during androgen deprivation therapy: observational study of veterans with prostate cancer.
        J Natl Cancer Inst. 2010; 102: 39-46
      2. QuickFacts United States, United Stated Census Bureau,