There were 10 subcommittees created after identifying approximately 60 key opinion leaders in the field, and each group was asked to develop and submit a document on an assigned topic. A discussion for each of the committees’ findings resulted in modifications to each of the original draft documents, and the final report from each committee is obtained in a special section of the journal issue.
A post-meeting survey for each of the consensus statements was sent to all the participants, with an 83% response rate. Professor Gopal Badlani masterfully organized this conference and produced a summary report for the 17 survey items, along with the percent consensus of responders for each item. I obtained verbal permission from him to summarize/paraphrase each of his key summary statements, along with the percent consensus for each.
- For the current time, the name of this disorder should remain IC/BPS. 90% agreement among respondents. There was what I thought was a great quote from this discussion that we all should heed: “The constant name changing of IC simply creates confusion in the community, while maybe netting a couple of cheap publications for the instigating clinicians. It does not move research or treatment forward.”
- The presence of Hunner lesions distinguishes a bladder centric phenotype of IC in both women and men and can be abbreviated as (IC/BC/HL+). 92% concurrence.
- Low bladder capacity, defined as less than 500ml under anesthesia without a Hunner ulcer, is also considered as bladder centric disease, abbreviated (IC/BC/HL-). 92% consensus. Noted was the fact that there was debate as to what constitutes a low bladder capacity, with suggestions ranging from 350ml to 500.
- Bladder symptoms with pelvic pain, along with a non-low bladder capacity under anesthesia, define bladder pain syndrome that is not bladder centric, abbreviated as (IC/BPS/NBC/HL-). 70% consensus. Noted was the fact that there were differing opinions about adding pelvic floor dysfunction, and the fact that some of these patients may progress to a smaller bladder capacity under anesthesia over time.
- Bladder symptoms with pelvic pain, widespread pain, or other associated conditions are part of a category of BPS non- bladder centric, abbreviated as (IC/WPS/NBC /HL-). 70% consensus. There was a general sentiment that lower urinary tract symptoms alone, without pelvic pain, are not IC/BPS
- IC/BPS implies a chronicity of bladder symptoms and pain for at least three months, after ruling out reversible causes or bladder malignancy. 90% concurrence.
- For initial assessment and follow-up, a standardized questionnaire should be used. Although there was 100% consensus, the preferred questionnaire type showed a wide distribution. 45% favored the O'Leary Sant, 40% the GUPI from MAPP, and a minority suggested an entirely new assessment with separation of lower urinary tract symptoms and pain.
- A voiding diary for one to two days should be part of an initial assessment. 90% consensus. Some preferred a three-day diary
- A careful history should include a list of coexisting or comorbid conditions. 100% agreement.
- A physical exam of the region with pain mapping of the pelvic muscles should be part of an initial assessment. 95% consensus.
- A body mapping of pain should be part of the initial assessment. 95% consensus.
- A urine analysis and post void residual should be part of the initial assessment. 100% consensus.
- A cystoscopy should be considered early in the diagnosis to establish the presence or absence of a Hunner Ulcer. 90% consensus.
- Bladder capacity under anesthesia, standardized hydro distension with or without bladder biopsy are optional for phenotyping of an IC/BPS patient. 90% consensus.
- Addition of a PSA test should be considered in men who are labeled as having quote prostatitis quote to rule out prostatic inflammation and diagnose them as IC/BPS/CPPS. 65% concurrence. It should be noted that the non-urology attendees had no opinion on this question. The main objection of those who did offer an opinion was the lack of standardized data. It also should be noted that an elevated PSA in the proper age group could lead the patient and physician down a sometimes never-ending path of ruling out significant prostate cancer
- A urodynamic pressure flow test should be considered to rule out an active bladder or bladder neck obstruction in young men with IC/BPS symptoms. 85% consensus. Noted was the fact that most thought this should be considered after an initial screening with a uroflow/post-void residual.
- In initiating treatment, a patient should be phenotyped to one of four categories: IC/BPS/BC/HL+, IC/BPS/BC/HL-, IC/BPS/NBC/HL-, IC/WPS/NBC. HL-. “Most” agreed, but it was noted that it would be difficult for clinicians to strictly follow this, and the fact that some patients do not fit exactly into one of these 4 categories.
A substantial number of IC/BPS patients have comorbid pelvic disorders (e.g. pelvic floor dysfunction, vulvodynia, endometriosis) which require separate treatment”. One committee concerned itself with the role of gynecologic findings in IC/BPS, identifying 5 main comorbid disorders: endometriosis/adenomyosis, genitopelvic pain penetration disorder/sexual dysfunction, overactive pelvic floor muscles, hormone-associated genotourinary changes, vulvodynia/ vestibulodynia. One committee provided an update on the therapeutic management strategies, including cognitive therapies, dietary and fluid management, pelvic floor exercises and bladder training, physical therapy, injections and nerve blocks, cystoscopy with Hyde Rd. distension, currently available oral therapies, intravesical therapies, neuromodulation, and added the possibilities of purine nucleoside phosphorylase inhibition and low-intensity shockwave therapy.
The histological and molecular distinctions of Hunner lesions and non-Hunner lesions were discussed, including urothelial alterations, inflammatory changes, vascularization and fibrosis, and neurophysiological dysfunction. A comprehensive review of the literature focusing on biomarkers, including bladder capacity, symptom intensity, bladder wall thickness, serum and urinary inflammatory cytokines, and other biomarkers of inflammation, oxidative stress, and urothelial and extracellular matrix remodeling, was the subject of another committee discussion. Finally, one committee’s goal was to develop the framework for a global registry inclusive of all sexes, ages 18 years and older. Standardization and reporting of data collection were, as you might expect, the subject of considerable discussion in this regard.
Anyone interested in this topic will benefit immeasurably by reading each of these well-written and well-referenced committee reports. I think the group has notably succeeded in its stated goal of …. “having moved the needle forward”.
Written by: Alan Wein, MD, PhD, FACS, Professor of Clinical Urology, Department of Urology, Desai Sethi Urology Institute (DSUI), University of Miami Miller School of Medicine, University of Miami Health Systems, Miami, FL