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 Denmark 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 (QoL) designed specifically for this study. Function was correlated with QoL in a multivariate model using ordinal logistic regression with QoL 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 QoL.