Development and Validation of the Ileoanal Pouch Syndrome Distress Index

Objective: To design and validate a questionnaire-based scoring system that measures distress and quality of life implications related to specific bowel function symptoms and consequences. Summary of Background Data: The Patient Reported Outcomes after Pouch Surgery Delphi consensus study identified symptoms and consequences that were utilized to previously create a pouch severity score. The existing score does not specifically evaluate patients’ accommodations to pouch function or their perceived distress related to bowel-related quality of life over time. 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 identified in the prior Delphi consensus study. For each item, participants also responded to the question “How much does having this symptom (or consequence) bother you?”. Participants also reported on their quality of life. The responses were used to generate the Ileoanal Pouch Syndrome Distress index. Test-retest validity, convergent validity, and clinical validity were evaluated. Results: The distress index was calculated by adding the patient’s scores for all 16 items. The possible scores range from 0 to 64, ranked from least to most bothersome symptoms. With increasing distress index scores, a higher proportion of patients reported poor quality of life. The receiver operating characteristic area under the curve for the distress score prediction of poor quality of life was calculated at 0.871. The distress index showed excellent correlation with bowel function scores and measures of clinical validity. Conclusions: The distress index represents a step forward in the patient-centered management of ileoanal pouch function. When used in combination with the severity score and longitudinally over time, it will allow surgeons and gastroenterologists to take a nuanced approach to optimizing bowel function for a population of highly complex gastrointestinal patients, while accounting for symptom accommodation over time.