Abstract Background In the Netherlands, the growing burden of IBD, driven by a rising prevalence, a shift to new expensive treatments, and lifelong tight monitoring of mucosal inflammation, necessitates redesigning care processes to ensure accessible and high quality care in the future. Successful innovation requires engagement from all stakeholders within the healthcare system. In this study, we aimed to identify key elements of IBD care from an inter-, and intra-stakeholder perspective in the Dutch setting, exploring shared and unique elements to inform future healthcare improvements. Methods This study included all stakeholders involved in Dutch IBD care: 1) patients, 2) informal caregivers (ICs), 3) healthcare professionals (HCPs), 4) managers of gastroenterology departments, and 5) national stakeholders, e.g. pharmaceutical companies, healthcare insurers, eHealth providers, and the IBD patient organization. Participants were recruited from outpatient clinics and through networks, using purposive, convenience, and snowball sampling. In Phase 1, key elements of IBD care were identified through semi-structured interviews. These elements were prioritized within each group in Phase 2 and Phase 3 convened all stakeholders to discuss shared values, differences, and future implications (Figure 1). Results A total of 78 participants contributed to the study; 21 patients, 10 ICs, 27 HCPs, 8 managers and 12 national stakeholders. Key elements for each stakeholder group (Phase 1) and their rankings (Phase 2) are shown in Figure 2. Patients and ICs mainly identified micro-level elements of IBD care, while managers and national stakeholders focused on meso- and macro-level elements. HCPs addressed elements across all levels. Key elements prioritized across groups for the group discussion (Phase 3) included: accessible and affordable IBD care, adequate information and support, regular follow-up, holistic care with sufficient time and attention, achieving remission, patient autonomy and self-management, shared decision-making, remote monitoring, IBD care at home, easy access to HCPs, HCP’s expertise, scientific research, and a trustful relationship between HCPs, patients and ICs. In Phase 3, stakeholders acknowledged the importance of the identified elements, but revealed differing interpretations of shared concepts, like remote monitoring. Preserving personalized care and a trusting relationship between patients and HCPs were emphasized as key priorities in this. Conclusion Our study shows shared values but also significant differences between stakeholders in IBD care. Shared values can be priorities in redesigning care processes, but innovators should be aware of the elements valued by specific stakeholders based on their unique perspectives.
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