Organization of the first national workshop for families in Switzerland concerned with hereditary cancer syndromes.
13 affiliations
- 1Department of Clinical Research, University of Basel, Basel, Switzerland.
- 2E3S Social Sciences and Sports, University of Strasbourg, Strasbourg, France.
- 3Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
- 4Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Munich, Germany.
- 5Department of Medical Oncology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
- 6Department of Public Health, Institute of Nursing Science, University of Basel, Basel, Switzerland.
- 7Institute for Social Planning, Organisational Change and Urban Development, School of Social Work, University of Applied Sciences and Arts Northwestern Switzerland, Muttenz, Switzerland.
- 8Department of Business Economics, Health and Social Care, University of Applied Sciences and Arts of Southern Switzerland, Manno, Switzerland.
- 9Division of Medical Genetics, Institut Central Des Hôpitaux, Hôpital du Valais, Sion, Switzerland.
- 10Division of Medical Oncology, University Hospital Basel, Basel, Switzerland.
- 11Department of Biomedicine, University of Basel, Basel, Switzerland.
- 12Unit of Oncogenetics, Division of Precision Oncology, University Hospitals of Geneva, Geneva, Switzerland.
- 13Department of Clinical Research, University of Basel, Basel, Switzerland. [email protected].
Abstract
Background
Although 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
The 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
One 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
We 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.
Related
- Japanese Society for Hereditary Tumors Guidance: Hereditary Cancer Syndromes With Multigene Panel Testing, 2025 Edition.
- Comprehensive approach to characterize the circuit between the E and the MVL concerned with visual processing in the avian pallium
- Identification, Isolation and Genomic Characterization of an Emerging Shamonda Virus Variant Associated with Bovine Disease in Switzerland.
- The Apparent Urban Advance in Juvenile Vulpes vulpes Observations Diminishes after Accounting for Switzerland's Elevational Structure
- Multi-factor assessment of future climate hazards to apple production across Switzerland’s growing regions
BibTeX
@article{glick2026organization,
title = {{Organization of the first national workshop for families in Switzerland concerned with hereditary cancer syndromes.}},
author = {Sarah Glick and Monica Aceti and Claire M Barton and Bettina M Zimmermann and Lisa Schiess and Muriel Fluri and Andrea Kaiser-Grolimund and Carla Pedrazzani and Elissa Azzi and Arianna Maria Elena Bonfanti and Barbara Peters and Benjamin Thiele and Pierre O Chappuis and Maria Caiata-Zufferey and Maria C Katapodi and CASCADE Consortium},
journal = {Journal of community genetics},
year = {2026},
month = oct,
doi = {10.1007/s12687-026-00960-1},
url = {https://europepmc.org/article/MED/42897292},
note = {CC BY-NC-ND},
}
RIS
TY - JOUR
TI - Organization of the first national workshop for families in Switzerland concerned with hereditary cancer syndromes.
AU - Sarah Glick
AU - Monica Aceti
AU - Claire M Barton
AU - Bettina M Zimmermann
AU - Lisa Schiess
AU - Muriel Fluri
AU - Andrea Kaiser-Grolimund
AU - Carla Pedrazzani
AU - Elissa Azzi
AU - Arianna Maria Elena Bonfanti
AU - Barbara Peters
AU - Benjamin Thiele
AU - Pierre O Chappuis
AU - Maria Caiata-Zufferey
AU - Maria C Katapodi
AU - CASCADE Consortium
PY - 2026
DA - 2026/10/20
JO - Journal of community genetics
DO - 10.1007/s12687-026-00960-1
UR - https://europepmc.org/article/MED/42897292
AB - Background Although 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 The 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 One 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 We 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.
SN - 1868-310X
SN - 1868-6001
ER -