Co-designing CKD Talk Topics, a structured agenda-setting intervention for people with chronic kidney disease: "Keep It Simple, Stupid"

Rationale & Objective: People with advanced chronic kidney disease (CKD) often face barriers to communication and self-advocacy, which may be mitigated by the practice of collaborative agenda-setting. We developed Chronic Kidney Disease Talk Topics (CKD Talk Topics), a structured agenda-setting intervention designed to help people with CKD and their care partners identify and communicate their discussion priorities during nephrology visits. Study Design: Following a literature review, we used a participatory design approach involving semi-structured interviews with patients (with care partners who attended), and clinicians to develop CKD Talk Topics Setting & Participants: Interviews occurred in a nephrology clinic in rural northern New England with patients that had advanced CKD (stages 4 and 5), some attending care partners, and clinicians. Analytical Approach: We used Framework Analysis to summarize suggested content, format, and structure, and participatory Practical Thematic Analysis to explore communication needs and expectations. Results: We interviewed 12 patients (with 4 accompanying care partners), and 8 clinicians. Overall, participants viewed CKD Talk Topics as a helpful tool. Patients emphasized simplicity, larger visual elements, CKD-specific content, and flexibility in usage. Clinicians noted the intervention's potential for patient-centered, efficient visits. The final tool features six plain-language topics: "Your Body," "Your Feelings," "What Matters to You," "Taking Care of Yourself," "What Happens Next," and "Everyday Needs." Limitations: Our findings may reflect the context of our clinic, which is in Northern New England with limited racial and ethnic diversity. Conclusions: The co-design process resulted in a simplified CKD Talk Topics intervention. These changes supported our goal: a patient-centered, structured agenda-setting tool to help people with advanced CKD and their care partners communicate priorities during nephrology visits. Feasibility testing is planned.