一项关于卵巢癌女性遗传咨询障碍及移动技术教育潜力的定性研究。
A qualitative study of barriers to genetic counseling and potential for mobile technology education among women with ovarian cancer.
作者信息
Vogel Rachel Isaksson, Niendorf Kristin, Lee Heewon, Petzel Sue, Lee Hee Yun, Geller Melissa A
机构信息
1Department of Obstetrics, Gynecology and Women's Health, Division of Gynecologic Oncology, University of Minnesota, MMC 395, 420 Delaware Street SE, Minneapolis, MN 55455 USA.
2Department of Surgery, Division of Colon and Rectal Surgery, University of Minnesota, Minneapolis, MN USA.
出版信息
Hered Cancer Clin Pract. 2018 Jul 4;16:13. doi: 10.1186/s13053-018-0095-z. eCollection 2018.
BACKGROUND
National guidelines recommend genetic counseling for all ovarian cancer patients because up to 20% of ovarian cancers are thought to be due to hereditary cancer syndromes and effective cancer screening and prevention options exist for at-risk family members. Despite these recommendations, uptake of genetic counselling and testing is low. The goal of this study was to identify barriers to and motivators for receipt of genetic counseling along with preferences regarding potential use of a mobile application to promote genetic counseling.
METHODS
Three focus groups were conducted including 14 women with a diagnosis of epithelial ovarian, primary peritoneal or fallopian tube cancer. Topics included understanding of genetic counseling, perceived pros and cons, preferences for receiving health information, and familiarity with mobile phone technology. Transcripts were analyzed using standard procedures of qualitative thematic text analysis and descriptive coding techniques.
RESULTS
Six major themes regarding barriers to and motivators of genetic counseling and use of mobile technology in promoting genetic counseling emerged: (1) need for information, (2) relevance, (3) emotional concerns, (4) family concerns, (5) practical concerns, and (6) mobile application considerations.
CONCLUSIONS
These data reiterate previously reported barriers to genetic counseling as observed in other populations. Participants were supportive of the use of mobile technology for promoting uptake of genetic counseling.
背景
国家指南建议为所有卵巢癌患者提供遗传咨询，因为据认为高达20%的卵巢癌是由遗传性癌症综合征引起的，并且为有风险的家庭成员提供了有效的癌症筛查和预防方案。尽管有这些建议，但遗传咨询和检测的接受率很低。本研究的目的是确定接受遗传咨询的障碍和动机，以及对使用移动应用程序促进遗传咨询的潜在偏好。
方法
进行了三个焦点小组讨论，包括14名被诊断为上皮性卵巢癌、原发性腹膜癌或输卵管癌的女性。主题包括对遗传咨询的理解、感知的利弊、接收健康信息的偏好以及对手机技术的熟悉程度。使用定性主题文本分析和描述性编码技术的标准程序对转录本进行分析。
结果
出现了关于遗传咨询的障碍和动机以及使用移动技术促进遗传咨询的六个主要主题：（1）信息需求，（2）相关性，（3）情感担忧，（4）家庭担忧，（5）实际担忧，以及（6）移动应用程序考虑因素。
结论
这些数据重申了先前在其他人群中观察到的遗传咨询障碍。参与者支持使用移动技术来促进遗传咨询的接受。
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