Abstract / Summary
Pre-transplant education is essential for informing patients with chronic kidney disease (CKD) about treatment options, including deceased and living donor kidney transplantation, associated risks and benefits, pre-transplant assessments, and post-transplant care. Despite existing educational efforts, many patients continue to experience information gaps, unmet support needs, and uncertainty-related distress, which can hinder shared decision-making. Patient decision aids have demonstrated efficacy in improving knowledge, engagement, and value-concordant choices. However, International Patient Decision Aids Standards (IPDAS)-aligned development of transplant-related decision-support tools remains limited in Europe. We developed a web-based multimedia decision-support tool titled “The New Us” using a structured, user-centered process aligned with IPDAS. The process included (i) understanding the needs and context of users and healthcare professionals; (ii) developing and refining the prototype; and (3) observing users interacting with it. The tool was designed to support a key preference-sensitive decision in advanced CKD, namely whether to pursue kidney transplantation or initiate dialysis, while also addressing related considerations such as donor type and pre-emptive transplantation. Prototype testing involved kidney and liver transplant recipients and clinicians, who assessed acceptability and usability. Recipients were included to provide retrospective insight into the transplant journey, whereas Beta testing with the intended target population of pre-transplant CKD patients is planned as the next phase. Descriptive statistics were used to summarize quantitative feedback, and qualitative comments were thematically analyzed to inform subsequent refinements. Key themes identified during development highlighted the need for clear communication about the transplant-versus-dialysis decision, emotional support, and representation of both the clinical and experiential aspects of the journey. The final tool consisted of a five-episode digital series disseminated through a dedicated website and social media channels. Prototype testing indicated high acceptability and usability among recipients and clinicians, including perceived support for reflection on options and preparation for clinical dialogue, with potential transferability to liver transplantation. “The New Us” represents an innovative, narrative-driven decision-support tool developed in accordance with IPDAS to support preference-sensitive decision-making in kidney transplantation. Its digital, storytelling-based structure may support accessibility informed deliberation. Future Beta Testing and subsequent randomized trials will assess real-world integration and impact on decisional outcomes.