N08 What patients expect and perceive in terms of their participation in their health and healthcare, while living with inflammatory bowel disease

Background Patient participation is generally important in healthcare and essential for effective selfcare. Having opportunities to engage is particularly key when living with a long-term condition, such as Inflammatory Bowel Disease (IBD)1. Still, opportunities for participation are often restricted, for example when patients and healthcare professionals do not have a shared understanding of which aspects to focus on and when. Healthcare professionals often hold their own idea of what patient participation is, and how it can be facilitated, whereas patients tend to view it on a wider perspective2. In order to facilitate IBD-patients’ participation in health and healthcare, their preferences for and experiences of participation needs to be further known. Methods Patients with IBD listed with the national IBD Registry at a site in Sweden were invited to respond to a valid tool for their preferences for and experiences of participation: the 4Ps tool (Patient Preferences for Patient Participation)3. It conceptualises participation by 12 attributes, reported with predefined response alternatives for how important each item is for their participation and whether it transpired in their healthcare contact. 737 unique responses were subjected statistical analyses. Results Across all items, a majority of the IBD patients elected them as very important or crucial for their participation. The attributes most often listed as crucial for their participation were associated with a sharing of information and experiences: being listened to by their healthcare staff, telling about symptoms and issues, having explanations as to what is/will be done, and learning what is planned. Still, 39-51% of the patients had a match between their preference for and experience of participation. Thus, up to every second patient had not fully recognised needs or potentials to engage. The mismatches more often represented patients experiencing less participation than preferred, than more. Yet, most prominent mismatches transpired for participation as in managing prescribed care and managing self-care, indicating that patient resources were not fully acknowledged. Conclusion While many patients with IBD have had opportunities to engage in the ways and extent that matters to them (taking into account their needs and resources), mismatches between patients’ preferences for and experiences of participation were common. Further efforts to accommodate patient participation are needed, including strategies enabling patients and professionals to come to a shared understanding. Such interventions are best developed in a collaborative manner, ensuring that they meet the needs and resources of both patients and healthcare organisations. References: 1. Lesnovska KP, Hollman Frisman G, Hjortswang H, Hjelm K, Borjeson S. Health care as perceived by persons with inflammatory bowel disease - a focus group study. J Clin Nurs. Nov 2017;26(21-22):3677-3687. doi:10.1111/jocn.1374 2. Hurtig C, Arestedt L, Uhlin F, Eldh AC. Patient participation-18 months of patient and staff perspectives in kidney care: A mixed methods study addressing the effects of facilitating staff person-centredness. J Eval Clin Pract. Feb 2025;31(1):e14099. doi:10.1111/jep.14099 3. Eldh AC, Holmefur M, Luhr K, Wenemark M. Assessing and reporting patient participation by means of patient preferences and experiences. BMC Health Serv Res. Jul 29 2020;20(1):702. doi:10.1186/s12913-020-05574-y Conflict of interest: Sköld, Patricia: The author declare to not have any conflict of interest. Eldh, Ann Catrine: The author declare to not have any conflict of interest. Bendtsen, Marcus: The author declare to not have any conflict of interest. Pihl Lesnovska, Katarina: I have recieved speakers fee from Takeda and Ferring during 2025