Abstract Background Shared decision-making (SDM) is a collaborative process between patients and healthcare professionals (HCPs) that is essential to align treatment choices with patient values. The increasing variety of treatment options for Crohn’s Disease (CD) challenges the assessment and communication of risks and benefits for both patients and HCPs. Patient decision aids (PDAs) have been shown to be effective in enhancing patient-centered care across various decision-making contexts. This study aims to identify the informational needs of both patients and HCPs to develop an effective PDA for CD. Methods Qualitative semi-structured interviews were conducted with 7 CD patient representatives and 5 HCPs. Purposive sampling was used for recruitment of respondents. An empirical phenomenological approach was taken in the interviews to describe similarities and differences of experiences, needs, and preferences of CD patients and HCPs. Interviews were conducted face-to-face or digitally, audio recorded, and transcribed verbatim. Transcripts were thematically analysed through consecutive open, axial, and selective coding. Results Preliminary results showed most patients were not actively involved but rather advised in their treatment decisions. Physicians typically preferred a particular treatment but regularly offered patients choices between similar medication options if they wanted more involvement. The primary concerns for patients were the reduction of medication related physical, mental, and social complaints that they often experienced from side effects, form of administration, and fear of surgery. This was reflected in the patients’ need for general disease information, treatment pros and cons, and patient experience stories. Physicians acknowledge that patients wish to be well-informed and believe they provide adequate information. However, many patients express feeling under-informed and frequently look for additional resources. Both groups find the idea of a PDA offering general and personalised information at varying stages in the treatment journey appealing, though physicians caution that personalised content may not be suitable for all patients. Conclusion This study highlights a barrier between the approach taken by physicians and patients’ desire for information and involvement in treatment. Providing a reliable and accessible source of information at key decision moments throughout the patient journey could help resolve this barrier. A well-designed PDA for CD patients with reliable information could empower them with confidence and support SDM. However, careful implementation is necessary to accommodate diverse patient needs and preferences.
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