Clinical Profiles and Symptom Burden Estimates to Support Decision-Making Using the Urinary Symptom Questionnaire for...

Area of Science:

• Urology
• Patient-Reported Outcomes
• Clinical Assessment

Background:

• Neurogenic bladder (NB) significantly impacts patients' quality of life, necessitating effective monitoring of urinary symptoms.
• Existing assessment tools may not fully capture the nuances of symptom burden and impact on daily management.
• Patient-centered approaches are crucial for developing valid and interpretable outcome measures.

Purpose of the Study:

• To describe the scoring approach, interpretability, validity, and utility of the new Urinary Symptom Questionnaire for Neurogenic Bladder-Intermittent Catheter (USQNB-IC).
• To evaluate a novel patient-centered patient-reported outcome (PRO) designed for individuals with NB requiring intermittent catheterization.
• To compare traditional scoring methods with a new profiling approach for the USQNB-IC.

Main Methods:

• Subject matter experts classified USQNB-IC items, creating profiles based on patient, clinician, and investigator decisions.
• A 6-month pilot study involved 103 participants completing the USQNB-IC weekly.
• The utility of classifications and profiles was assessed by examining differences between traditional total scores and profile-based decisions.

Main Results:

• Classification of 29 symptoms yielded four categories with exchangeable items within categories.
• Five distinct profiles emerged, summarizing symptom categories to support decision-making and track changes over time.
• The USQNB-IC items are not uniformly exchangeable, supporting a categorical scoring approach.

Conclusions:

• The USQNB-IC profiling method enhances valid and interpretable decision-making for patients and clinicians regarding urinary symptoms.
• Alternatively, four symptom subsets can serve as continuous outcomes, representing symptom burden in clinical management and research.
• This PRO facilitates both cross-sectional and longitudinal assessment of urinary symptoms in NB patients.