Experience Gained from the Development and Execution of a Multidisciplinary Multi-syndrome Hereditary Colon Cancer Family Conference
Genetic healthcare professionals provide genetic cancer risk assessment and follow-up care for patients facing hereditary cancers. To meet the needs of those affected by hereditary colorectal cancer, City of Hope and the Hereditary Colon Cancer Foundation collaborated to develop a “Family Day” conference. We describe the development of our conference based upon the Hereditary Colon Cancer Foundation’s “Family Day” program model, with refinements completed using the Participatory Action Research theoretical framework, which incorporated input from conference participants and researchers. Thirty-one participants attended the conference, representing patients with, or families, friends, and caregivers of those with, multiple colorectal cancer predisposition syndromes, including Lynch, familial adenomatous polyposis, and juvenile polyposis. Participants who completed the feedback surveys (n = 22) were highly satisfied with the presentation content, ranking the keynote lecture on family communication the highest of the conference events. Participants also provided feedback regarding how to improve future conferences. In conclusion, we share our experience and provide guidance for developing a successful hereditary colon cancer predisposition patient and family conference.
KeywordsPatient conference Lynch syndrome Genetic counseling Familial adenomatous polyposis Patient support
Research reported in this publication was supported by the National Cancer Institute of the National Institutes of Health under award number P30CA033572. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH. Additional support was received from the Oxnard Foundation (PI: T. Slavin).
Compliance with Ethical Standards
Conflict of Interest
Shawnie Bray and Travis H. Bray are co-founders of the Hereditary Colon Cancer Foundation. Ilana Solomon, Christina Rybak, Lily Van Tongeren, Lili Kuzmich, Kathleen Blazer, Bita Nehoray, Mariana Niell-Swiller, Karen Hurley, Jeffrey N. Weitzel, and Thomas P. Slavin declare that they have no conflict of interest.
Human Studies and Informed Consent
Research participants included in this work were consented through an Institutional Review Board protocol through the City of Hope. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
No animal studies were carried out by the authors for this article.
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