Co-designing CKD Talk Topics, a structured agenda-setting intervention for people with chronic kidney disease: "Keep It Simple, Stupid"
Abstract
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.
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BibTeX
@misc{saunders2026codesigning,
title = {{Co-designing CKD Talk Topics, a structured agenda-setting intervention for people with chronic kidney disease: "Keep It Simple, Stupid"}},
author = {Catherine H. Saunders and Anne Dade and Steve L. Bernstein and Clay A. Block and Hannah Crowe-Cumella and Glyn Elwyn and Lorraine Gerraughty and Gavin Henning and Vanessa Junkins and Ishaan Kumar and Annika Milliman and Joseph P. Nano and Geetha Ramkumar and Niveditta Ramkumar and Gabriela Sanders and Ailyn Sierpe and Quenton Turner-Gee and Anji Zhu and Ann O’Hare and JoAnna K. Leyenaar},
howpublished = {medRxiv},
year = {2026},
month = oct,
doi = {10.64898/2026.10.28.26366231},
url = {https://www.medrxiv.org/content/10.64898/2026.10.28.26366231v1},
note = {CC BY-NC-ND},
}
RIS
TY - UNPB
TI - Co-designing CKD Talk Topics, a structured agenda-setting intervention for people with chronic kidney disease: "Keep It Simple, Stupid"
AU - Catherine H. Saunders
AU - Anne Dade
AU - Steve L. Bernstein
AU - Clay A. Block
AU - Hannah Crowe-Cumella
AU - Glyn Elwyn
AU - Lorraine Gerraughty
AU - Gavin Henning
AU - Vanessa Junkins
AU - Ishaan Kumar
AU - Annika Milliman
AU - Joseph P. Nano
AU - Geetha Ramkumar
AU - Niveditta Ramkumar
AU - Gabriela Sanders
AU - Ailyn Sierpe
AU - Quenton Turner-Gee
AU - Anji Zhu
AU - Ann O’Hare
AU - JoAnna K. Leyenaar
PY - 2026
DA - 2026/10/28
PB - medRxiv
DO - 10.64898/2026.10.28.26366231
UR - https://www.medrxiv.org/content/10.64898/2026.10.28.26366231v1
AB - 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.
ER -