Restorative proctocolectomy for ulcerative colitis: development and validation of a new scoring system for pouch dysfunction and quality of life

Aim The purpose of this study was to develop and validate a pouch dysfunction score that could identify the aspects of function which have the greatest impact on quality of life as perceived by the patient. Method All ( n  =   1757) patients having restorative proctocolectomy in D enmark between 1980 and 2010 were identified. Of these, 1229 were available for study and were sent a questionnaire on bowel function and quality of life ( Q oL) designed specifically for this study. Function was correlated with Q oL in a multivariate model using ordinal logistic regression with Q oL as a dependent variable. The pouch dysfunction score was developed from a randomly selected half of the study population and the validity was tested on the other half. Results 1047 (85%) patients returned the questionnaire. On multivariate analysis, the symptom domains of ‘incomplete emptying’, ‘severity of urgency’, ‘number of bowel movements/24 h’, ‘major incontinence’ and ‘use of anti‐diarrhoeal medication’ were associated with reduced QoL. The score was divided into three categories including ‘none’, ‘minor’ and ‘some/major’ pouch dysfunction. The corresponding coefficients gave the score a range from 0 to 7.5. There was a highly significant difference ( P  <   0.001) in score between the categories. The area under the receiver operating curve was 0.81. Conclusion Urgency, incomplete emptying, number of bowel movements/24 h, major incontinence and use of anti‐diarrhoeal medication have a major impact on QoL. There was a high accuracy for the score, demonstrating its potential clinical usefulness in relating symptoms to Q oL.