开发MyCancerGene数字健康门户,以提高患者对生殖系癌症遗传测试结果的理解:开发,用户和可用性测试研究
Phillip Trieu1, Dominique Fetzer1, Briana McLeod1
1Division of Hematology-Oncology, Abramson Cancer Center, The University of Pennsylvania, Philadelphia, PA, United States.
JMIR formative research
|May 14, 2025
概括
一个名为MyCancerGene的新型数字遗传健康门户 (GHP) 被开发出来,以帮助患者随着时间的推移了解遗传检测结果. 它解决了不确定性,并促进了更新,改善了患者的护理和与不断变化的遗传信息的接触.
科学领域:
- 遗传学 是一个遗传学.
- 数字健康数字健康
- 患者护理 患者护理
背景情况:
- 多基因面板增加了基因测试的不确定性.
- 需要纵向护理模型来更新患者对遗传测试解释和影响的信息.
- 需要有效的模型来更新患者和家庭病史.
研究的目的:
- 开发一个患者和遗传提供者知情的数字遗传健康门户 (GHP).
- 提高患者对遗传检测的纵向理解和反应.
- 解决基因测试后持续患者支持的差距.
主要方法:
- 一个五步的开发过程,包括患者调查和提供者焦点小组.
- 与患者和遗传提供者进行定性访谈和用户测试.
- 基于反的代开发,以创建MyCancerGene门户.
主要成果:
- 患者对数字GHP的高度兴趣 (90%) 是为了可访问性和理解性.
- 患者和提供者输入塑造了八个关键门户组件和功能.
- 确定的挑战包括隐私问题,但患者对更新感到舒适,与一些提供者不同.
结论:
- MyCancerGene是一个以患者为中心的数字GHP,经过广泛的反开发.
- 该门户旨在改善对遗传测试的纵向理解和反应.
- 解决遗传证据和风险信息的不断变化的性质.
相关概念视频
01:33Cancer-Critical Genes I: Proto-oncogenes
Genes usually encode proteins necessary for the proper functioning of a healthy cell. Mutations can often cause changes to the gene expression pattern, thereby altering the phenotype.
When the function of certain critical genes, especially those involved in cell cycle regulation and cell growth signaling cascades, gets disrupted, it upsets the cell cycle progression. Such cells with unchecked cell cycles start proliferating uncontrollably and eventually develop into tumors.
Such genes that act...
When the function of certain critical genes, especially those involved in cell cycle regulation and cell growth signaling cascades, gets disrupted, it upsets the cell cycle progression. Such cells with unchecked cell cycles start proliferating uncontrollably and eventually develop into tumors.
Such genes that act...
01:05Cancer-Critical Genes II: Tumor Suppressor Genes
Genes usually encode proteins necessary for the proper functioning of a healthy cell. Mutations can often cause changes to the gene expression pattern, thereby altering the phenotype.
When the function of certain critical genes, especially those involved in cell cycle regulation and cell growth signaling cascades, gets disrupted, it upsets the cell cycle progression. Such cells with unchecked cell cycles start proliferating uncontrollably and eventually develop into tumors.
Such genes that act...
When the function of certain critical genes, especially those involved in cell cycle regulation and cell growth signaling cascades, gets disrupted, it upsets the cell cycle progression. Such cells with unchecked cell cycles start proliferating uncontrollably and eventually develop into tumors.
Such genes that act...