{
  "abstract": "Background\n\nAlthough Patient and Public Involvement (PPI) workshops with families affected by hereditary cancer predisposition syndromes can benefit both affected individuals and their support networks, PPI workshops are rarely being organized. This article presents the planning and implementation of a one-day PPI workshop for families affected by Hereditary Breast and Ovarian Cancer (HBOC) or Lynch Syndrome (LS) in Switzerland.Workshop design & implementation\n\nThe event was funded by the Swiss National Science Foundation and planned over a 12-month period. The program included expert sessions presented by clinicians and researchers; moderated, small-group participatory exchanges exploring patients' and families' unmet health, psychosocial and educational needs; and interactions with patient advocates. Participant satisfaction surveys were analyzed using descriptive statistics.Results\n\nOne hundred and five adults attended the workshop in Bern in May 2025, with representation from the three major linguistic regions of Switzerland. Almost 75% of participants reported a personal genetic predisposition to cancer. Most respondents were very satisfied or satisfied with the workshop (92%), and nearly all (96%) found the presentations engaging, with the topic of immunotherapy as an emerging treatment rated highest. The participatory exchange sessions were the most valued component of the workshop overall (97% positive feedback).Conclusions\n\nWe provide proof of concept for the feasibility and positive impact of organizing a national workshop for families affected by HBOC and LS. The participatory nature of the workshop allowed affected individuals and their support networks to communicate unmet needs related to their personal experiences and suggest future avenues for research.",
  "abstract_shown": true,
  "affiliations": [
    "Department of Clinical Research, University of Basel, Basel, Switzerland.",
    "E3S Social Sciences and Sports, University of Strasbourg, Strasbourg, France.",
    "Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.",
    "Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany.",
    "Department of Medical Oncology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.",
    "Department of Public Health, Institute of Nursing Science, University of Basel, Basel, Switzerland.",
    "Institute for Social Planning, Organisational Change and Urban Development, School of Social Work, University of Applied Sciences and Arts Northwestern Switzerland, Muttenz, Switzerland.",
    "Department of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland, Manno, Switzerland.",
    "Division of Medical Genetics, Institut Central Des Hôpitaux, Hôpital du Valais, Sion, Switzerland.",
    "Division of Medical Oncology, University Hospital Basel, Basel, Switzerland.",
    "Department of Biomedicine, University of Basel, Basel, Switzerland.",
    "Unit of Oncogenetics, Division of Precision Oncology, University Hospitals of Geneva, Geneva, Switzerland.",
    "Department of Clinical Research, University of Basel, Basel, Switzerland. Maria.katapodi@unibas.ch."
  ],
  "article_type": null,
  "arxiv": null,
  "author_total": 16,
  "authors": [
    {
      "affs": [
        0
      ],
      "name": "Sarah Glick"
    },
    {
      "affs": [
        1
      ],
      "name": "Monica Aceti"
    },
    {
      "affs": [
        0
      ],
      "name": "Claire M Barton"
    },
    {
      "affs": [
        2,
        3
      ],
      "name": "Bettina M Zimmermann"
    },
    {
      "affs": [
        0
      ],
      "name": "Lisa Schiess"
    },
    {
      "affs": [
        4
      ],
      "name": "Muriel Fluri"
    },
    {
      "affs": [
        5,
        6
      ],
      "name": "Andrea Kaiser-Grolimund"
    },
    {
      "affs": [
        7
      ],
      "name": "Carla Pedrazzani"
    },
    {
      "affs": [
        1
      ],
      "name": "Elissa Azzi"
    },
    {
      "affs": [
        8
      ],
      "name": "Arianna Maria Elena Bonfanti"
    },
    {
      "affs": [
        0
      ],
      "name": "Barbara Peters"
    },
    {
      "affs": [
        9,
        10
      ],
      "name": "Benjamin Thiele"
    },
    {
      "affs": [
        8,
        11
      ],
      "name": "Pierre O Chappuis"
    },
    {
      "affs": [
        7
      ],
      "name": "Maria Caiata-Zufferey"
    },
    {
      "affs": [
        12
      ],
      "name": "Maria C Katapodi"
    },
    {
      "name": "CASCADE Consortium"
    }
  ],
  "bibtex": "https://research.draconitic.com/paper/93v47a4arncmp.bib",
  "cited_by": 0,
  "doi": "10.1007/s12687-026-00960-1",
  "fulltext_url": "https://europepmc.org/articles/PMC13680590",
  "id": "93v47a4arncmp",
  "issns": [
    "1868-310X",
    "1868-6001"
  ],
  "landing_url": "https://europepmc.org/article/MED/42897292",
  "language": "eng",
  "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": [
    [
      "openalex",
      "1311|BRCA gene mutations in cancer"
    ]
  ],
  "openalex": "W7222983039",
  "pdf_url": "https://europepmc.org/articles/PMC13680590?pdf=render",
  "pmcid": "PMC13680590",
  "pmid": "42897292",
  "published": "2026-10-20",
  "publisher": null,
  "ris": "https://research.draconitic.com/paper/93v47a4arncmp.ris",
  "sources": [
    {
      "first_seen": "2026-10-30T12:19:32Z",
      "native_id": "MED:42897292",
      "source": "europepmc",
      "url": "https://europepmc.org/article/MED/42897292"
    }
  ],
  "subjects": [
    {
      "field": "biology",
      "origin": "openalex:1311|BRCA gene mutations in cancer",
      "subfield": "genetics-genomics"
    }
  ],
  "title": "Organization of the first national workshop for families in Switzerland concerned with hereditary cancer syndromes.",
  "title_text": "Organization of the first national workshop for families in Switzerland concerned with hereditary cancer syndromes.",
  "type": "peer-reviewed",
  "updated_at": "2026-10-30T12:19:32Z",
  "url": "https://research.draconitic.com/paper/93v47a4arncmp",
  "venue": "Journal of community genetics",
  "versions": []
}