Difference between patients’ and clinicians’ perception of pouch dysfunction and its impact on quality of life following restorative proctocolectomy

Aim The Pouch Dysfunction Score (PDS) is a five-item instrument that evaluates bowel function and quality of life following restorative proctocolectomy for ulcerative colitis. The PDS includes items that have a significantly negative impact on quality of life from the patient's point of view. The study aimed to establish how pouch dysfunction is perceived by clinicians in relation to patients experience. Method Fifty-eight leading clinicians in the field of inflammatory bowel disease were invited to complete two PDS-based exercises. In part 1, they received a list of the 12 bowel symptoms from which the PDS had been developed and were asked to identify and rank (in order of severity) the five they thought had the most significantly negative impact on quality of life. In part 2, they were given the list of symptoms perceived by patients to be most troublesome and were then required to enter a score that they thought was appropriate for each item according to the impact on quality of life. Results Forty-three clinicians responded, and each correctly identified one to three items selected by patients and included in the PDS. Severity of urgency was selected by 29 (67%) clinicians, and four (9%) rated it to be the most important. Incomplete emptying after defaecation was selected by 10 (23%). Frequency of defaecation and the use of anti-diarrhoeal medication were selected by 14 (33%) and three (7%) clinicians, respectively. Twenty-six (60%) did not include incomplete emptying and 25 (58%) did not include uncontrolled loss of stool in their selection. Conclusion This study demonstrates that clinicians do not have a great understanding of the symptoms of pouch dysfunction that really matter to the patient.