Treatment effectiveness in interstitial cystitis/bladder pain syndrome: Do patient perceptions align with efficacy-based guidelines?

Avril Lusty, Elizabeth Kavaler, Kay Zakariasen, Victoria Tolls, J. Curtis Nickel


Introduction: We sought to determine if patients’ perceptions of success or failure of interstitial cystitis/bladder pain syndrome (IC/ BPS) therapies proposed in treatment guidelines align with the evidence from available clinical trial treatment data.

Methods: A total of 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. Patientreported 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’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 patientreported 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.

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