{
  "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.",
  "abstract_shown": true,
  "affiliations": [],
  "article_type": "PUBLISHAHEADOFPRINT",
  "arxiv": null,
  "author_total": 20,
  "authors": [
    {
      "name": "Catherine H. Saunders",
      "orcid": "0000-0003-0819-6610"
    },
    {
      "name": "Anne Dade",
      "orcid": "0009-0007-4369-2931"
    },
    {
      "name": "Steve L. Bernstein"
    },
    {
      "name": "Clay A. Block",
      "orcid": "0000-0002-6972-2090"
    },
    {
      "name": "Hannah Crowe-Cumella",
      "orcid": "0009-0004-6504-7253"
    },
    {
      "name": "Glyn Elwyn",
      "orcid": "0000-0002-0917-6286"
    },
    {
      "name": "Lorraine Gerraughty",
      "orcid": "0009-0009-4693-1525"
    },
    {
      "name": "Gavin Henning"
    },
    {
      "name": "Vanessa Junkins",
      "orcid": "0009-0001-5925-7236"
    },
    {
      "name": "Ishaan Kumar",
      "orcid": "0009-0002-9448-719X"
    },
    {
      "name": "Annika Milliman",
      "orcid": "0009-0007-7761-4958"
    },
    {
      "name": "Joseph P. Nano",
      "orcid": "0000-0003-2201-0819"
    },
    {
      "name": "Geetha Ramkumar"
    },
    {
      "name": "Niveditta Ramkumar",
      "orcid": "0000-0002-4165-7426"
    },
    {
      "name": "Gabriela Sanders",
      "orcid": "0009-0009-2421-340X"
    },
    {
      "name": "Ailyn Sierpe",
      "orcid": "0000-0003-4369-9934"
    },
    {
      "name": "Quenton Turner-Gee",
      "orcid": "0009-0009-3698-4252"
    },
    {
      "name": "Anji Zhu",
      "orcid": "0009-0006-9686-0081"
    },
    {
      "name": "Ann O’Hare"
    },
    {
      "name": "JoAnna K. Leyenaar",
      "orcid": "0000-0002-0555-0154"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/ar3qgf7tcjmkw.bib",
  "cited_by": 0,
  "doi": "10.64898/2026.10.28.26366231",
  "fulltext_url": "https://www.medrxiv.org/content/10.64898/2026.10.28.26366231v1.full",
  "id": "ar3qgf7tcjmkw",
  "issns": [],
  "landing_url": "https://www.medrxiv.org/content/10.64898/2026.10.28.26366231v1",
  "language": "en",
  "licence": "CC-BY-NC-ND",
  "licence_label": "CC BY-NC-ND",
  "licence_source": "article",
  "licence_url": "https://creativecommons.org/licenses/by-nc-nd/4.0/",
  "metadata_licence": null,
  "native_subjects": [
    [
      "heading",
      "Article"
    ],
    [
      "medrxiv",
      "nephrology"
    ]
  ],
  "openalex": null,
  "pdf_url": "https://www.medrxiv.org/content/10.64898/2026.10.28.26366231v1.full.pdf",
  "pmcid": "PMC13734183",
  "pmid": "42990686",
  "published": "2026-10-28",
  "publisher": "Cold Spring Harbor Laboratory Preprints",
  "ris": "https://research.draconitic.com/paper/ar3qgf7tcjmkw.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:22:04Z",
      "native_id": "10.64898/2026.10.28.26366231",
      "source": "medrxiv",
      "url": "https://www.medrxiv.org/content/10.64898/2026.10.28.26366231v1"
    },
    {
      "first_seen": "2026-11-08T12:23:49Z",
      "native_id": "PMC13734183",
      "source": "pmc",
      "url": "https://doi.org/10.64898/2026.10.28.26366231"
    }
  ],
  "subjects": [
    {
      "field": "medicine",
      "origin": "medrxiv:nephrology",
      "subfield": "general"
    }
  ],
  "title": "Co-designing CKD Talk Topics, a structured agenda-setting intervention for people with chronic kidney disease: \"Keep It Simple, Stupid\"",
  "title_text": "Co-designing CKD Talk Topics, a structured agenda-setting intervention for people with chronic kidney disease: \"Keep It Simple, Stupid\"",
  "type": "preprint",
  "updated_at": "2026-11-08T12:23:49Z",
  "url": "https://research.draconitic.com/paper/ar3qgf7tcjmkw",
  "venue": "medRxiv",
  "versions": []
}