Solomon Ilana, Rybak Christina, Van Tongeren Lily, Kuzmich Lili, Blazer Kathleen, Nehoray Bita, Niell-Swiller Mariana, Bray Shawnie, Bray Travis H, Hurley Karen, Weitzel Jeffrey N, Slavin Thomas P
City of Hope, Division of Clinical Cancer Genomics, Duarte, CA, USA.
Hereditary Colon Cancer Foundation, Portland, OR, USA.
J Cancer Educ. 2019 Dec;34(6):1204-1212. doi: 10.1007/s13187-018-1430-9.
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.
遗传医疗专业人员为面临遗传性癌症的患者提供遗传癌症风险评估和后续护理。为满足受遗传性结直肠癌影响者的需求，希望之城与遗传性结肠癌基金会合作举办了一场“家庭日”会议。我们描述了基于遗传性结肠癌基金会“家庭日”项目模式举办会议的过程，并使用参与式行动研究理论框架进行完善，该框架纳入了会议参与者和研究人员的意见。31名参与者出席了会议，他们代表患有多种结直肠癌易感综合征的患者，或这些患者的家人、朋友和护理人员，这些综合征包括林奇综合征、家族性腺瘤性息肉病和幼年性息肉病。完成反馈调查的参与者（n = 22）对会议内容高度满意，将关于家庭沟通的主题演讲列为会议活动中评价最高的一项。参与者还就如何改进未来会议提供了反馈。总之，我们分享我们的经验，并为成功举办遗传性结肠癌易感患者及家庭会议提供指导。
