Introduction: Non-adherence to treatment regimens is a significant risk factor in reducing graft failure following kidney transplantation in adolescent and young adult kidney transplant recipients aged 16 to 30 years. This leads to adverse clinical outcomes such as graft rejections, graft loss and decreased quality of life and puts a substantial economic burden on healthcare systems. Recognizing the importance of involving patient and public members in intervention development, this study presents RENEW HOPE, a user driven DBCI targeting treatment adherence in young kidney transplant recipients. By actively engaging patients and healthcare professionals (HCPs) throughout the stage of intervention development it is expected that its acceptability and effectiveness will increase.
Methods: A systematic review identified effective DBCIs components based on PRISMS self-management taxonomy for improving treatment adherence in young kidney transplant recipients. Subsequently, a qualitative study explored barriers and facilitators to treatment adherence and patient’s views on digital approaches, with themes resulting from thematic analysis mapped against the Behaviour Change Technique (BCT) taxonomy to inform intervention functionalities and components. All together this resulted in the first prototype, which will be refined based on feedback gathered during focus groups and semi-structured interviews and followed by a Patient and Public Involvement and Engagement (PPIE) activities including young kidney transplant patients (n=3-5) and HCPs such as physicians (n=2), renal dietitians (n=2), and physiotherapists (n=2).
Results: Semi-structured interviews (n=14) and one focus group (n=5) with young kidney transplant patients, emphasized the importance of educational resources, guidance on post-transplant lifestyle factors (e.g., diet, exercise), social support, personalized goal-setting tools, gratitude practices, and medication reminders. These findings were systematically mapped onto the BCT taxonomy, identifying specific BCTs such as education resources aligned with providing information and personalized goal setting aligned with goal setting. This ensured that intervention components were evidence-based, enhancing their effectiveness. RENEW HOPE adopts a user-centric approach, refining intervention functionalities based on PPIE input.
Conclusion : The active involvement of patients and HCPs in developing RENEW HOPE ensures a tailored approach to address the specific needs of young kidney transplant recipients. Their invaluable contributions guide the selection and refinement of intervention components aiming to improve treatment adherence. By empowering young patients to self-manage and adapt behaviour, RENEW HOPE offers potential for increasing treatment adherence, reducing healthcare costs associated with transplant complications, and laying a foundation for future research, particularly through a feasibility Randomized Controlled Trial to test acceptability, feasibility, and preliminary effectiveness.