Abstract
RATIONALE & OBJECTIVE: Increasing access to kidney transplantation requires patients to be active on the waiting list and empowered to consider donor offers that are consistent with their preferences. We sought to develop and refine patient-centered communication tools for shared decision-making conversations within dialysis facilities about active status on the waiting list, consent for hepatitis C and high-kidney donor profile index organ offers, and living donation. Conversations may help patients improve their probability of kidney transplantation. STUDY DESIGN: A qualitative study convening focus groups of stakeholders from dialysis and kidney transplantation. Iterative study design to understand practice patterns to design and refine communication tools with stakeholder input. SETTING & PARTICIPANTS: A total of 28 stakeholders, including 13 providers, 13 patients, and 2 care partners, participated in virtual focus groups. Providers represented a diverse, national sample of physicians, advanced practice providers, technicians, nurses, and social workers. ANALYTICAL APPROACH: Thematic analysis of focus group transcripts using a constant comparative approach to identify themes and subthemes. Thematic coding was refined iteratively during the analytic process, and consensus coding was used to determine final themes and subthemes. A subset of the communication tools was quantitatively evaluated using a validated tool. RESULTS: Information about kidney transplantation exchanged between patients and dialysis providers was described as transactional and passive. Successful lived experiences of other patients treated with dialysis empowered discussions while providers' cursory knowledge of the nuances of kidney transplantation acted as barriers to shared decision-making conversations. Personalized information, tailored to the appropriate health literacy level, and delivered through multiple modalities were identified as necessary characteristics of communication tools. Conveying statistics and risks and benefits of different organ types were positive features of the communication tool, while potential implementation strategies required refinement. LIMITATIONS: Findings may not represent all practice patterns and patient preferences. CONCLUSIONS: Understanding existing practice patterns and preferred content for communication tools can be used to engage dialysis teams in shared decision-making about transplantation.