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Paul Cavallaro*1, Samuel Eisenstein3, Nicola Fearnhead4, Kinga S. Olortegui5, Randolph Steinhagen6, Madhulika Varma7, Steven D. Wexner8, Liliana G. Bordeianou2
1Cleveland Clinic, Cleveland, OH; 2Massachusetts General Hospital, Boston, MA; 3University of California San Diego, La Jolla, CA; 4University of Cambridge, Cambridge, Cambridgeshire, United Kingdom; 5University of Chicago Pritzker School of Medicine, Chicago, IL; 6Icahn School of Medicine at Mount Sinai, New York, NY; 7University of California San Francisco School of Medicine, San Francisco, CA; 8Cleveland Clinic Florida, Weston, FL

Background: The Patient Reported Outcomes after Pouch Surgery (PROPS) Delphi consensus study identified a list of seven bowel symptoms and seven consequences that were utilized to develop and validate the Ileoanal Pouch Syndrome Severity Index score. The aim of the present study was to develop a meaningful measure of bowel function that accounts for the possibility of patients perceiving the same symptoms differently over time.

Methods: Patients who had a proctocolectomy with ileoanal pouch for ulcerative colitis ≥ 12 months of restored intestinal continuity were recruited by a combination of mail/email to patients treated at 11 high volume IBD centers, and online advertisements through the Crohn's and Colitis Foundation social media pages. After obtaining consent, questionnaires regarding bowel function were administered. Participants were asked to rate how "bothersome" each symptom was on a scale of 1-9. Participants also reported on quality of life. Individual question score values were designated to form the "Ileoanal Pouch Syndrome Distress Inventory". Validity was tested by receiver operating characteristic (ROC) curve analyzing the association between distress inventory score and quality of life. Convergent validity was assessed by comparing scores to the LARS, FIQoL, MSK bowel function score, and Wexner incontinence score. Lastly, clinical validity was assessed by comparing scores between patients based on the absence of key clinical variables.

Results: Questionnaires were completed by 676 patients eligible for inclusion. Weighted scores based on symptom bother scores were computed on the basis of the questionnaire results. The range of possible scores was 0 to 64 (Interquartile range 12-38). As scores increased, the percentage of patients reporting good quality of life decreased and the percentage of patients reporting poor quality of life increased (Figure 1). The distress index score was then used to predict poor quality of life, where the ROC curve showed an area under the curve of 0.87. This is compared to an area under the curve of 0.85 using the IPS severity index score. The score showed excellent convergent validity with all tested bowel function scores (p<0.001) and was highly correlated with long term outcomes such as pouchitis, cuffitis, and other pouch complications.

Conclusions: This study developed a patient-centered scoring system that utilizes patients perception of how bothersome various symptoms are, and then correlates these reported perceptions with quality of life. This tool will ideally allow clinicians to follow individual patients as they potentially accommodate to their symptoms and learn to cope over time, even if the actual frequency/severity of symptoms remains unchanged, which may allow for a more detailed understanding of how various interventions affect the quality of life of patients with pouches.

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