Abstract Background Following a colectomy for ulcerative colitis, patients may choose to live with an end ileostomy, or explore restorative options, such as the formation of an ileo-anal pouch (IPAA). Although the 2 options are comparable in terms of quality of life (QoL), previous reviews have highlighted a significant gap in our understanding of work-related restrictions following surgery, which is significant component of social functioning and QoL. This study aims to explore the lived experiences of IPAA patients, in relation to working. Methods Following an exploratory qualitative methodology, this study used semi-structured interviews, to explore work-related experiences, of adult patients with a confirmed diagnosis of UC, that had undergone IPAA surgery. Interviews were conducted either online or face-to-face, audio-recorded and transcribed verbatim. Data were analysed thematically using the Braun & Clarke framework. Results A total of 20 interviews were conducted and analysed. Five key themes emerged: the importance of maintaining a working ability, working with an IPAA (with a number of subthemes, including toilet habits at work, absenteeism, eating habits, commuting and benefits of remote working), interaction and communication with employers, adjustments to accommodate working with IPAA and potential interventions to improve information exchange about working after IPAA surgery. Unanimously, provision of information in relation to work was thought to be inadequate, with patients highlighting a need for both pre-operative information and post-operative support and guidance. Conclusion This is the first study offering an in-depth understanding of the day-to-day experiences of IPAA patients, in relation to working. It provides a much-needed insight of the challenges and restrictions experienced and offers a framework for subsequent meaningful interventions. Future work should focus on integrating our findings in pre-operative informational material and decision aids, addressed to patients considering surgery for UC, in order to support well-informed counselling. Conflict of interest: Mr. Argyriou, Orestis: No conflict of interest Ghersin, Itai: No conflict of interest Worley, Guy: No conflict of interest Tozer, Philip: Personal Fees: Takeda - speakers fees, member of Inspire, and advisory boards Ferring - speakers fees Falk - speakers fees Tillott’s - speakers fees J & J - speakers fees Abbvie - speakers fees Hart, Ailsa: Grant: Takeda Personal Fees: Abbvie, Amgen, Arena, AZ, Falk, Celltrion, Eli Lilly, Ferring, Genentech/ Roche, GSK, Pfizer, Takeda, Napp, Pharmacosmos, Janssen (J & J), Bristol-Myers Squibb, Gilead, Galapagos, Alfasigma Sahnan, Kapil: Speaker fees from Takeda, JnJ, Intuitive Ad Board with Medtronic
Argyriou et al. (Thu,) studied this question.