P093 Innovating in IBD care: what do patients and informal caregivers value? Preliminary results of a narrative inquiry

Abstract

Abstract Background Given the increasing incidence, evolving treatment goals, and the need for tight and holistic monitoring, transformation in delivery of Inflammatory Bowel Disease (IBD) care is warranted. To innovate successfully, it is crucial to consider the values of healthcare professionals (HCP) and healthcare services, as well as the patient’s and informal caregiver’s perspective. This study aims to explore what patients with IBD and their informal caregivers value in Dutch IBD care. Methods In total, approximately 16 patients and 8 informal caregivers from an academic and a general hospital will be included. Respondents are recruited purposefully. Data collection will take place until data saturation is reached. The interviews are focused on real-life experiences and stories of respondents with regard to IBD. Interviews are conducted face-to-face or digitally, audio recorded and transcribed verbatim. Independent coding was executed by three researchers. A deductive thematic analysis approach was used, guided by the Picker Principles of Person Centred Care. Results Semi-structured narrative interviews were conducted with 8 IBD patients and 4 informal caregivers, i.e. family members, between June-September 2023. All Picker principles came across in the narratives. Respondents said that it is important to receive an effective treatment, minimizing intestinal symptoms and to function as good as possible with IBD. Involving patients in their treatment plan and paying attention to non-medical aspects, e.g. impact on work and social relationships, was relevant to respondents. Patients and caregivers valued easy and accessible communication with their HCP, the feeling to be heard, and immediate action of the HCP when required. A trustful relationship, fostered through e.g. regular face-to-face contact, was highlighted as important. Some respondents appreciated the use of eHealth tools, as these facilitate remote care if desired. Moreover, providing informal caregivers with information about the disease, treatment and impact on daily life was suggested as beneficial in supporting patients with IBD. Conclusion IBD patients and their informal caregivers value shared decision making, fast access to reliable healthcare advice, immediate action when needed, the feeling to be heard and a trustful relationship with their HCP when receiving IBD care in the Netherlands. These values and insight in the (shared)-values of all relevant stakeholders within the Dutch context will facilitate the development of valuable innovation and successful implementation. The perspectives of other stakeholders, such as HCPs, policymakers, health insurers, pharmaceutical companies, and eHealth providers, will be explored in an extensive qualitative study.