Editorial Comment from Dr Hanno to Interstitial cystitis, bladder pain syndrome, hypersensitive bladder, and interstitial cystitis/bladder pain syndrome - clarification of definitions and relationships.

Abstract

This contribution is beautifully written and exceptionally logical and focuses on the important topics of definition and classification. It deserves a careful read from those interested in this topic. The author argues that the term covering the “whole patients” should contain interstitial cystitis (IC), since IC is a historically-renowned name and used for insurance reimbursement. I would argue that interstial cystitis should be viewed as a disease rather than part of a syndrome and should be limited to patients with Hunner lesion as expanded upon in the article by Akiyama and Hanno in this supplement. I think patient groups and the medical profession need to educate insurance providers and government with regard to this, rather than further confuse the nomenclature by using the term as part of an umbrella designation with bladder pain syndrome (BPS). This problem was most clearly demonstrated in the confusing US Food and Drug Administration (FDA) Consensus Conference a year ago in which the combined term used in American Urological Association (AUA) guidelines “IC/BPS” was misinterpreted and IC was voted on as a separate entity from BPS without a clear definition, but both disorders were considered as one condition for which pharmaceutical companies could conduct combined trials (J. Urol. Vol. 200, 39–42, July 2018). I would suggest that this confusion is our own fault for keeping the “IC” part of IC/BPS nomenclature due to the lobbying of patient groups and worries about insurance reimbursement. Part of the reason (but by no means the entire reason) we have not had a new drug approved by FDA for this condition since 1996 relates to the confusion of combining phenotypes under one umbrella for drug testing. I believe that if we consider Hunner lesion as a separate disease from the bladder pain syndrome, it would be no different than how we treat urinary tract infection, radiation cystitis, carcinoma in situ, or other conditions manifest by hypersensitivity of the bladder for which there are clear reasons to consider them as identifiable separate diseases and not a part of a symptom-based syndrome. I think that if we move Hunner lesion to be considered as a separate disease (IC), then whether we call the patients with hypersensitive bladder symptoms (discomfort, pressure or pain in the bladder usually associated with urinary frequency and nocturia and no clinically identifiable bladder pathology) “hypersensitive bladder” or “BPS,” it becomes more a question of semantics than any major disagreement on underlying issues. Until glomerulations can be shown to be significant in terms of diagnosis, prognosis, or treatment, I believe they can be left out of the discussion entirely as they just add to confusion with no redeeming benefit for the patient. (reference #22). None declared.