Objective: 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.
Methods: 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.
Results: 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.
Conclusion: 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.
Keywords: chronic prostatitis; diary; interstitial cystitis; questionnaire; review.
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