Login to Access Video or Poster Abstract: MP29-20
Sources of Funding: Canadian Institute of Health Research

Introduction

Evidence from clinical treatment trials in interstitial cystitis/bladder pain syndrome (IC/BPS) are employed to develop treatment guidelines. Do patients&[prime] perceptions of success or failure of those specific therapies align with that of available clinical trial data?

Methods

1628 adult females with a self-reported diagnosis of IC completed a web based survey in which patients described their perceived outcomes with the therapies they were exposed to. Previously published literature used in part to develop IC/BPS guidelines provided the clinical trial data outcomes. Patient reported outcomes were compared to available clinical trial outcomes and published treatment guidelines.

Results

Based on patient perceived outcomes (benefit:risk ratio), the most effective treatments were opioids, phenazopyridine, and alkalizing agents with amitriptyline and antihistamines reported as moderately effective. The only surgical procedure with any effectiveness was electrocautery of Hunner&[prime]s lesions. In order of efficacy reported in the literature, the therapies for IC/BPS with predicted superior outcomes should be: cyclosporine A, amitriptyline, hyperbaric oxygen, pentosan polysulfate plus subcutaneous heparin, botulinum toxin A plus hydrodistension, and L-arginine. While some of the guideline recommendations aligned with patient reported effectiveness data, there was a general disconnect between guidelines and effectiveness reported in clinical practice.

Conclusions

There is a disconnect between real world patient perceived effectiveness of IC/BPS treatments compared to the efficacy reported from clinical trial data and subsequent guidelines developed from this efficacy data. Optimal therapy must include the best evidence from clinical research but should also include real life clinical practice implementation and effectiveness.

Funding

Canadian Institute of Health Research