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Revised: Oct. 12, 2001

ICN Editorial - A Critical Need : Revising the Diagnostic Criteria of IC

(By Jill Osborne) When an IC patient visits a physician for a diagnosis of IC, they are typically given a variety of tests before a diagnosis of IC is confirmed. Foremost for the diagnosis has been the use of hydrodistention and cystoscopy, which allows a physician to look for Hunner's Ulcer's or the presence of petechial hemorrhages (aka glomerulations) on the bladder wall. Yet, a recent article in the British Journal of Urology points out the challenges that we have not only with finding a conclusive method of diagnosing IC, but also a fundamental flaw with the way our disease is currently named.

The diagnosis of IC was vague until 1987, when the US NIDDK developed a criteria that was to be used in national research studies. Argwal, O'Reilly & Dixon state "The criteria were intended to be for research purposes, to compare the patient population in various research studies, but because there were no other clinical guidelines, they were adopted by urologists worldwide for diagnosing patients." (1) The problem, though, was that not all IC patients in a typical urology practice met these strict guidelines. A patient with frequency, urgency or pain, with no evidence of petechial hemorrhaging, may have been told that they had psychiatric problems.

In the past five years, the discrepancies between the NIDDK criteria and the practical demands of a diverse IC patient population have grown. The very definition of IC has been challenged as several research studies have confirmed that petechial hemorrhages are not unique to IC. The ICN reported two years ago on a study by Waxman, which found that normal women (with no bladder symptoms) undergoing tubal ligation had these hemorrhages (2). In addition, results from the NIH IC Database study demonstrate that of the 90% of patients diagnosed with IC, two thirds of these patients would fail to meet a strict application of the NIDDK criteria (3). Argwal and colleagues stated "This is a very important longitudinal study of these patients, which clearly indicates that the NIDDK criteria are unsuitable for clinical application and would be best confined to research studies."

The Interstitial Cystitis Survival Guide (Robert Moldwin, MD) supports this conclusion. Dr. Moldwin states "Clinicians used to rely on the presence of these bleeding points (petechial hemorrhages/glomerulations) to make a diagnosis of IC. Recent observations, however, demonstrate that the presence of glomerulations doesn't always correlate with a diagnosis of IC. Yes, they are commonly seen in IC, but they may be present in many other bladder diseases and may even be present in patients without bladder disease." (4)

At last June's AUA conference, George Schuster MD made a passionate presentation on his development of diagnostic criteria appropriate for children. For the first time, we saw a physician actively adapt the NIDDK criteria for a population that had previously been excluded. The NIDDK criteria specifically excludes children under the age of 18 from a diagnosis of IC. Based upon a modest study of 49 children, Dr. Schuster found that 88% of the children studied met his modified guideline and strongly suggested that IC was not as "rare" as previously accepted in children. (5)

How then should IC be diagnosed? Several new methods have been suggested, such as the Potassium Sensitivity Test. Many doctors, however, now diagnose IC based upon a patient's symptomology and, of course, the exclusion of other bladder diseases. Does this mean that patients should not have a hydrodistention? No. But this decision is often made on a case by case basis. Hydrodistentions do give the physician the opportunity to examine the bladder wall carefully, to perform biopsies and to determine bladder capacity under anesthesia. If a patient has any doubts or concerns, they should talk with their physician about them.

As to the name of IC, Agarwal offers compelling reasons for changing the name of this syndrome. "The term IC is fraught with problems: First, including the term cystitis makes the patient think that they have acquired some kind of infection and thus hope to benefit from anti-infective agents; second, the term IC gives no indication of the severity (or pain level) of the disease. the inflammation of the bladder walls seen in IC can be found in many other bladder disorders... and therefore the term is incorrect even from a pathological perspective." Argwal suggests that the term "painful bladder syndrome" is more appropriate. Still others have suggested the terms pelvic pain syndrome or lower urinary tract syndrome.

In either case, it is clear that much work remains to be done. An international panel should be convened to flesh out new diagnostic criteria that is more applicable to a clinical practice, as well as incorporating the needs of children and other special groups. The new International Interstitial Cystitis Patient Network (http://www.interstitial-cystitis.org) may be the ideal body to do so. Above all else, we must be reassured that patients will not be told that it is "all in their heads" just because they fail to meet the strict NIDDK guidelines.

(1) Agarwal, O'Reilly and Dixon. Interstitial cystitis - a time for revision of name and diagnostic criteria in the new millennium. BJU International 88 (4), 348-350
(2) Waxman, Sulek, Kuehl. Cystoscopic findings consistent with interstitial cystitis in normal women undergoing tubal ligation. J Urol 1998: 160: 1663-7
(3) Hanno, Landis, Matthews-Cook, Kusek, Nyberg and the Interstitial Cystitis Database Study Group. The diagnosis of interstitial cystitis revisited: lessons learned from the National Institute of Health Interstitial Cystitis Database Study. J Urol 199;161:553-557
(4) Moldwin, R. The Interstitial Cystitis Survival Guide, New Harbinger Publications, Inc. 2000
(5) Schuster, G. Interstitial cystitis as a cause of voiding dysfunction in children. Abstract #272. Supplement to the Journal of Urology - AUA Anaheim 2001