How are work-related outcomes reported, after surgery for ulcerative colitis (UC)? A systematic review and development of a longlist of reported outcomes

Abstract

Background: Following a subtotal colectomy for ulcerative colitis (UC), patients may opt to live with a permanent ileostomy or explore restorative options, such as an ileo-Anal pouch (IPAA) or an ileo-rectal anastomosis (IRA). The ability to work is a significant determinant of quality of life (QoL), frequently examined within subscales on social functioning, of validated patient reported outcome measure (PROM) instruments, such as the SF-36 and the Inflammatory Bowel Disease Questionnaire (IBDQ). The aim of this systematic review was to examine how work-related outcomes, after surgery for UC, have been reported on so far, in addition to creating a longlist of items, to inform the design of future studies. Method(s): The systematic review was registered on PROSPERO (registration number CRD42024614534) and conducted in accordance with PRISMA guidelines. Studies were included if they were reporting on any work-related outcome, following any type of surgery for UC, in adult populations. Result(s): Initial search returned 1586 studies, and after title, abstract and full-Text screening,139 studies were included for data extraction. A total of 63 studies reported on the relevant subscales of a validated questionnaire, with 41 studies reporting on the SF-36, 14 on the social function scale of the IBDQ, and 9 on the social handicap subscale of the Oresland score. A total of 74 studies reported on other outcomes, such as work restrictions, employment rates/status, disability pensions and benefits. Five studies reported on outcomes of qualitative interviews. A longlist of reported items was collated, organised in 4 key domains: work restrictions, employment status, time-off work and provisions/support. Conclusion(s): This systematic review demonstrates significant variability in the measurement of work-related outcomes, following surgery for UC, as well as a lack of in-depth understanding of the work life experiences of such patients, justifying the need for further research. The generated longlist provides a rich resource, that will inform the design of a subsequent qualitative (interview-based) study, exploring the lived experiences of this patient population.