Patient-reported Outcome Measures in Ileoanal Pouch Surgery: a Systematic Review

To summarise frequency, type, and heterogeneity of patient-reported outcomes measures [PROMs] in papers reporting on outcomes after ileal pouch anal anastomosis [IPAA].

Prevalence of ulcerative colitis [UC] has risen in Western countries, and one in three patients requires surgery. IPAA is a frequently performed procedure for UC, and a lack of standardisation is manifest in reporting outcomes for inflammatory bowel disease [IBD] despite the clear need for inclusion of PROMs as primary outcomes in IBD trials.

Scopus, Pubmed, and Web of Science databases were searched from January 2010 to January 2023 for studies investigating outcomes in IPAA surgery. The primary outcome was the proportion of studies reporting outcomes for IPAA surgery for UC, which included PROMs.

The search identified a total of 8028 studies which, after de-duplication and exclusion, were reduced to 79 articles assessing outcomes after IPAA surgery. In all 44 [55.7%] reported PROMs, with 23 including validated questionnaires and 21 papers using authors' questions, 22 different PROMs were identified, with bowel function as the most investigated item. The majority of studies [67/79, 85%] were retrospective, only 14/79 [18%] were prospective papers and only two were [2.5%] randomised, controlled trials.

Only half of the papers reviewed used PROMs. The main reported item is bowel function and urogenital, social, and psychological functions are the most neglected. There is lack of standardisation for use of PROMs in IPAA. Complexity of UC and of outcomes after IPAA demands a change in clinical practice and follow-up, given how crucial PROMs are, compared with their non-routine use.