Few interstitial cystitis/painful bladder syndrome patients receive proper diagnosis, care

Key Points

Phoenix-The RAND Interstitial Cystitis Epidemiology (RICE) study, which yielded the surprisingly large and best estimate so far of the number of U.S. women with IC symptoms, is now telling us much more. These women are not getting the diagnosis and treatment they need, despite serious effects on quality of life.

The survey results also indicate that women with IC have significant co-morbidities and are proactive about self-care.

The new analyses, presented at the 2011 Society for Urodynamics and Female Urology winter meeting in Phoenix by senior author Sandra Berry, MA, should help spur educational outreach to non-urologist providers, improve the care these patients receive, and shed light on some knotty research questions.

Nevertheless, the new analyses show that although nearly all the women-90%-sought treatment for their symptoms, less than half received any sort of diagnosis, only 17% received a diagnosis from a urologist, less than one-third had seen a urologist, and only 10% were under a urologist's regular care.

Very few women with IC/PBS symptoms had any of the standard treatments for IC/PBS. Only 13% had undergone hydrodistention, which is now considered a third-line therapy in the new AUA clinical guidelines for the condition. Patients were slightly more likely to be taking medications for incontinence or urgency, which are not included as treatments in the new clinical guidelines. Only a very small minority were receiving bladder instillation.