P599 Perspectives on disease- and treatment-related issues encountered by patients with Inflammatory Bowel Disease: a qualitative concept mapping study
Risager Christensen, K.(1);Steenholdt, C.(1);Skougaard, M.(2);Ainsworth, M.A.(3);Brynskov, J.(1);Buhl, S.(1);Kristensen, L.E.(2);Schjødt Jørgensen, T.(2);
(1)Gentofte and Herlev Hospital, Gastroenterology, Herlev, Denmark;(2)The Parker Institute- Copenhagen University Hospital, Rheumatology, Copenhagen, Denmark;(3)Odense University Hospital, Gastroenterology, Odense, Denmark
Background
Therapeutic options for inflammatory bowel diseases (IBD) have documented effect on hard endpoints such as clinical and endoscopic remission. However, little is still known about issues that are of concern and importance to patients. This study aimed to explore, and rate, the importance of treatment- and disease-related issues and concerns experienced by patients with Crohn’s disease (CD) and ulcerative colitis (UC) by a state-of-the art qualitative approach.
Methods
Concept Mapping (CM) is a validated qualitative method, widely used to identify and organize disease- and treatment-related issues. In 8 CM workshops each with 3-4 participating patients, patients’ statements were elicited through a nominal group technique and organized using themes. The statements were visualized by multidimensional scaling, and cluster analysis was used to retrieve clusters organized by themes. The result was validated by patients, and further rated in terms of clinical importance. Then, thematic analyses were performed to generate a conceptual model of disease-related issues and concerns.
Results
In all, 13 CD and 13 UC patients participated of whom 7 (53%) and 3 (23%) were in clinical remission. There were 8 (62%) and 9 (69%) females, median disease duration of 17 years (IQR 12-20) and 11 years (5-15) respectively. In each disease group, 12 (92%) received biologics and 1 (8%) thiopurine, median age was 42 years (38-50). In the CD and UC workshops, 335 and 408 statements were generated, respectively, resulting in 10 CD and 11 UC clusters. The 5 highest rated clusters from each disease group along with generic clusters are shown in the Figure 1ab. Three clusters were rated to be “very important” (mean ≥ 4) for CD (Positive attitude, Acceptance and recognition, and Personal experiences living with CD), and 1 cluster for UC (Take responsibility and control over your own life). In the above-mentioned clusters, statements rated as of great importance (median= 5) were scattered as follows for CD 6/15 (40%), 10/35 (29%) and 12/30 (40%), respectively; and for UC 27/62 (44%)). In addition, UC patients also rated statements about efficacy of medication, and concerns and consequences high. CD patients created 26 (8%) (median=4) and UC 10 (2.5%) (median=4.5) symptoms specific statements scattered in different clusters.
Conclusion
The majority of the core concepts found in this study originated from patients’ perspectives focused on personomics, rather than from conventional patient reported outcomes such as bowel symptoms. Some core concepts differed across diseases, but most were independent of disease type. These data offer new knowledge to guide selection of clinically relevant and value-based treatment outcomes for IBD patients.