Development and Validation of a Symptom-based Scoring System for Bowel Dysfunction After Ileoanal Pouch Reconstruction

To utilize items identified as priorities by the Patient-Reported Outcomes after Pouch Surgery Delphi consensus study to create a validated tool for quantifying pouch function. BACKGROUND: The Patient-Reported Outcomes After Pouch Surgery Delphi consensus study identified 7 symptoms and 7 consequences as key domains for evaluating and analyzing ileoanal pouch function. METHODS: Pouch patients were recruited at inflammatory bowel disease centers and via patient advocacy websites. They were administered a questionnaire-based survey eliciting responses regarding the frequency of a variety of bowel symptoms. Associations between items and quality of life were computed in a score generation cohort of 298 patients by logistic regression modeling. Individual score values were designated to items to create an additive score titled the “Ileoanal Pouch Syndrome Severity Score.” Validity was tested in a subsequent cohort of 386 patients using receiver operating characteristic area under the curve. In addition, test–rest validity, convergent validity, and clinical validity were evaluated. RESULTS: After the determination of item weights, the range of possible scores was 0 to 145. Score ranges were then determined as cutoff values for “ileoanal pouch syndrome.” The score was then validated on the second patient cohort, with a receiver operating characteristic area under the curve of 0.83. Importantly, worsening severity of Ileoanal Pouch Syndrome score significantly correlated with higher rates of poor quality of life. Lastly, the questionnaire was rigorously validated to show test–retest validity, convergent validity compared with other bowel function scores, and clinical validity. CONCLUSIONS: This study developed a patient-centered, clinically useful scoring system that can quantify the range and severity of symptoms experienced by ileoanal pouch patients and their correlation with quality of life.