P540 The opinions and needs of patients living with refractory ulcerative proctitis, and the health care professionals who care for them; A Delphi consensus survey
RadfordBSc- MSc- PGCert- PhD student, S.(1)*;Kyriacou, M.(2);Moran, G.(3);
(1)Nottingham University Hospitals NHS Trust, Inflammatory Bowel Disease, Nottingham, United Kingdom;(2)Nottingham University Hospitals NHS Trust, Gastroenterology- Surgery Division, Nottingham, United Kingdom;(3)Nottingham NIHR Biomedical Research Centre, Translational Medical Sciences- School of Medicine- The University of Nottingham, Nottingham, United Kingdom;
Background
Refractory ulcerative proctitis presents a huge clinical challenge not only for the patients living with this chronic, progressive form of inflammatory bowel disease (IBD) but also for the professionals who care for them. Currently, there is limited research and evidence-based guidance on this condition, resulting in the large majority of patients living with the symptomatic burden of disease and reduced quality of life. The aim of this study was to establish a consensus on the thoughts and opinions surrounding refractory proctitis disease burden and management.
Methods
A three-round Delphi consensus survey was conducted among patients living with refractory proctitis and the healthcare experts with knowledge on this disease. A brainstorming stage which involved a focus group where the participants came up with an initial list of fourteen statements was completed. Following this, there were three rounds of Delphi surveys in which the participants were asked to rank the statements in order of importance alongside providing any additional comments or clarifications. Calculation of mean scores, analysis of comments and revision of statements was performed by the research team after each survey round. Statements meeting the pre-defined consensual mean score of at least 7 out of 10 were included in the final list of statements.
Results
In total, fourteen statements were suggested by the focus group at the initial creation stage. Based on these suggestions, the statements were presented to the participants and following completion of three Delphi survey rounds, all fourteen statements reached consensus following appropriate revision. The total response rate for the third Delphi round was 100% (21 out of 21 participants). Statements consider treatment options, areas for further research and clinical decision making factors.
Conclusion
This is the first study of its kind to provide a list of consensual statements on the opinions and needs of those living with refractory ulcerative proctitis. We established consensus on the thoughts and opinions surrounding refractory proctitis from both the experts who manage this disease and the patients living with it. These statements represent the first step towards providing more clinical research date and ultimately guidance aimed at this specific patient group.