Experts strive to comprehend IC: What's in a name?

April 1, 2007

Bethesda, MD-Concepts of what interstitial cystitis is, what causes it, and how to treat it are changing. That was apparent with the tremendous infusion of new ideas from many specialties here at the 2006 International Symposium: Frontiers in Painful Bladder Syndrome and Interstitial Cystitis, sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases. Whether those concepts can change without changing the name of the disease, however, was a hotly debated question.

Sparking the debate was a proposal from a small group of European urologists, the European Society for the Study of Interstitial Cystitis (ESSIC), to abandon the term "IC" altogether and to use the term "bladder pain syndrome" (BPS), followed by one of 16 different combinations of letters and numbers indicating the cystoscopic and biopsy studies done and their results. (For more on this ESSIC classification of bladder pain syndrome types, see http://www.urologytimes.com/bpstypes/).

In that debate, clinicians squared off with academics, Americans with Europeans, and patient groups with researchers. At issue was whether a new name would confuse the literature, prompt unneeded invasive and expensive tests, make reimbursement difficult for clinicians and patients, and exclude patients from deserved disability determinations or improve diagnosis and treatment in practice and redirect research into more fruitful paths. Of course, an objective test, such as antiproliferative factor, might radically change ideas about what the disease is and reignite debate.

Joop Van de Merwe, MD, PhD, from the department of immunology and internal medicine, Erasmus Medical Center in Rotterdam, the Netherlands, outlined what the confusable diseases are and the ESSIC group's recommendations on how to eliminate them (see table). He reminded the audience that patients may have both confusable disease and PBS/IC.

Toward evidence-based diagnosis

Christopher Payne, MD, associate professor of urology at Stanford University Medical School, Stanford, CA, headed the NIDDK subcommittee that reported on diagnostic testing at the NIDDK IC symposium 3 years ago. Dr. Payne pointed out that the subcommittee found no solid evidence in its review of the literature for any test to be used routinely in the diagnosis of interstitial cystitis.