The epidemiology of interstitial cystitis/bladder pain syndrome (IC/BPS): How good was a study of 30-years ago

Abstract

In 1987, Held, Hanno, Wein, Pauly, and Cahn (hereafter Held-Hanno) conducted an epidemiologic study of Interstitial Cystitis (IC) a rare project at the time. (Later published in 1990). The study was to a great extent a response to the relevant clinical experiences of Dr. Hanno, a University of Pennsylvania urologist who had had many interactions with Dr. Vicki Ratner, an orthopedic surgeon and IC patient, who had experienced a life changing prolonged terrible experience with this chronic disease. Consequently Dr. Ratner had become politically and media active, which lead to a brief, 3-h Sunday afternoon workshop at the suggestion of the NIH. This gathering financed and lead by Dr. Alan Wein, chair of Urology at Penn, brought in an economist, Dr. Held, who had a propensity to see the research world through empirical data collection and analysis where his focus had been on end stage renal disease. Some time prior to this meeting, the NIH had requested eight noted urologists to write a short memo answering the question: what do you know about IC? Held’s response on reading these memos was: these distinguished urologists do not agree on anything and besides no one has any data. That was the birth of this $35,000 study (Held-Hanno) funded by two small grants from the Urban Institute and NIDDK of the NIH. This chapter shows that Held-Hanno estimates were validated by most all subsequent studies.