P214 Patients know best- How patients designed a crohn’s disease study using exclusive enteral nutrition

Abstract

<h3>Introduction</h3> Patient and public involvement (PPI) has been shown to lead to research that is relevant, better designed, with clearer outcomes and faster uptake of new evidence.1 We sought patient and public views on the feasibility of a study to determine the benefits of Exclusive Enteral Nutrition (EEN) in adult Crohn’s disease (CD) patients undergoing surgery. We also sought patient and public views on how this study should be conducted. In particular: preferred mode of delivery of EEN, acceptable duration of EEN and choice of outcome measures. <h3>Methods</h3> Invitations to be involved in discussions about EEN in Crohn’s disease surgery were circulated in our IBD clinic and via social media, particularly for patients with experience with EEN and/or surgery. Twelve patients responded and eight members of the public participated in two on-line discussions which were hosted by gastroenterologist with input from experts in interview techniques and PPI in research in early 2021. Subsequent clarification on any questions was obtained by email. Information was provided explaining research terminology such as primary and secondary outcome measures to aid discussion. <h3>Results</h3> The panel consisted of 7 women and one man. Seven had Crohn’s disease and all had experience with EEN. Six had previous Crohn’s related surgery. 1) All expressed interest in further research into the role of EEN in Crohn’s disease. They unanimously agreed that oral intake was preferable to nasogastric route despite the general dislike of the taste. Use of EEN beyond 6 weeks was not thought to be realistically achievable due palatability concerns. However members were keen to maximise the duration of EEN to optimise the chance of benefit. There was much discussion around primary outcome measures. Members expressed an opinion that if this therapy was to be used routinely, patients would need to see an improvement in how quickly they got back to their normal activities of daily living, were able to eat a greater variety of foods and go out without worrying where is the nearest toilet. The panel felt the Crohn’s life impact questionnaire (CLIQ) best reflected this and was preferable to short IBD questionnaire or IBD Disk. (2,3,4) They liked the binary nature of the answers and felt the questions asked were the most relevant to them. <h3>Conclusion</h3> The panel involvement were key in development of our future research project ie Optimisation before Crohn’s surgery using Exclusive enteral Nutrition (OCEaN). Trial duration, mode of delivery and outcome measures were all chosen by patients in this National Institute of Health Research Health Technology Assessment funded study. <h3>References</h3> Blackburn S et al. Res Involv Engagem 4, 16 (2018). Wilburn J et al. Qual Life Res. 2015 Sep;24(9):2279-88. Irvine EJ et al. Am J Gastroenterol. 1996 Aug;91(8):1571-8. Ghosh S et al. Inflamm Bowel Dis. 2017 Mar;23(3):333-340.