Objective
To summarize frequency, type, and heterogeneity of Patient Reported Outcomes Measures (PROMs) in papers reporting on outcomes after Ileal Pouch Anal Anastomosis (IPAA).
Background
Prevalence of Ulcerative Colitis (UC) has risen in Western Countries, and 1 in 3 patients requires surgery. IPAA is a frequently performed procedures for UC, and a lack of standardization is manifest in reporting outcomes for Inflammatory Bowel Disease (IBD) despite the clear need for inclusion of PROMs as primary outcomes in IBD trials.
Methods
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.
Results
The search identified a total of 8028 studies which, after deduplication and exclusion, were reduced to 79 articles assessing outcomes after IPAA surgery. 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 mostly investigated item. Majority of studies (67/79, 85%) were retrospective, only 14/79 (18%) prospective papers and only 2 (2.5%) randomized controlled trials.
Conclusions
Only half of the papers reviewed used PROMs. The main reported item is bowel function, whilst urogenital, social, and psychological function 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 to their non-routinary use.