Urologic Chronic Pelvic Pain Syndrome: A Scoping Review of Syndrome-Specific Instruments

To facilitate research on interstitial cystitis/bladder pain syndrome (IC/BPS) and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS) symptom variability or flares, we reviewed the published literature to document existing data collection instruments (e.g., questionnaires and diaries), and to identify those relevant for flare research.

Seven databases were searched systematically for articles describing the development of instruments: (1) specific for IC/BPS, CP/CPPS, or both; and (2) intended for use by investigators beyond the development team. In total, 1216 abstracts and 79 full-text articles were reviewed, and data were extracted in duplicate.

We identified 17 instruments, 11 for IC/BPS, 5 for CP/CPPS, and 1 for both. In total, 13 instruments (12 questionnaires and 1 electronic diary) assessed symptoms for diagnostic, symptom evaluation, and/or symptom monitoring purposes, and included items assessing the presence, location, intensity (mostly typical intensity), and/or amount of time experienced pelvic pain and/or urinary symptoms. No instruments included items related to symptom variability or flares.

In addition to describing existing instruments for future urologic CPPS research, our review identified a lack of validated instruments for flares. Future studies should address this gap to facilitate rigorous research on this understudied topic.