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Interstitial cystitis prevalence in men higher than previously thought

Data suggest condition may be more prevalent than chronic prostatitis



Atlanta—Nearly as many American men as women may suffer from interstitial cystitis/bladder pain syndrome (IC/BPS) symptoms. And more men may have IC/BPS symptoms than have chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) symptoms. These surprising findings from the RAND Interstitial Cystitis Epidemiology (RICE) male study provoked plenty of surprise and controversy at the AUA annual meeting in Atlanta.


J. Quentin Clemens, MD
The new estimate puts the prevalence of those symptoms in men at 1.9% for a high-specificity case definition and 4.2% for a high-sensitivity definition. That translates to a range of 1.8 to 4.2 million U.S. men. The prevalence of CP/CPPS symptoms was pegged at 1.8% of U.S. men, or 2.1 million. The degree of overlap between the two was "not very large" at 17%, noted first author Anne Suskind, MD, a urology fellow at the University of Michigan, Ann Arbor.

When Dr. Suskind finished her presentation, attendees jumped to the microphone immediately to question the survey methods. One pointed out that nonresponders to a health survey usually have about half the symptoms of responders, so that if two-thirds did not take part in the survey, as Dr. Suskind reported, then the number would be far overestimated. It would be too big a leap from the 149 patients who completed the full interview about symptoms. "Ridiculous," said one urologist about the estimate in a later CP/CPPS session.

But the estimate may not be ridiculous. As senior author J. Quentin Clemens, MD, pointed out, this was not a health survey only. The screening questions were collected as part of a general cross-sectional survey about political opinions across the United States. Most people who were willing to answer the survey were also willing to answer the questions about whether someone in the household had bladder or pelvic pain symptoms, so the nonresponse rate would not have nearly as much impact on the estimate as it would have if this had been a health survey only. Moreover, added Dr. Suskind, the interviewers quickly asked for some demographic information for those who did not want to respond in order to weight the nonresponders.

Still, there is survey work to do to confirm whether these numbers indeed reflect the prevalence of IC/BPS in men, Dr. Clemens told Urology Times. In the RICE study of women, IC experts confirmed the IC/BPS diagnosis in a subgroup of women reporting symptoms, helping to confirm the prevalence, but this has yet to be done in the men.

The prevalence in women based on the RICE data also seemed high when they were first reported, Dr. Clemens pointed out. But further RICE data also showed that most of the women reporting symptoms still had symptoms a year later, that 90% had sought care for these symptoms, and that their quality of life was similar to that of women who have IC diagnosed in the clinic.

"In men, we don't have that yet because we're just analyzing the data. So, it's possible that this is an overestimate because we may be identifying more mild symptoms, but only time will tell," said Dr. Clemens, associate professor of urology at the University of Michigan. In the women, he pointed out, these methods identify a group that's pretty symptomatic, and although it's not certain that they have IC/BPS, "Whatever they have, you don't want."


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