Decision Support for Multigene Panel Testing and Family Risk Communication among Racially/Ethnically Diverse Young Breast Cancer Survivors

多基因面板测试和不同种族/民族的年轻乳腺癌幸存者之间的家庭风险沟通的决策支持

• 批准号: 10434656
• 负责人: Tarsha Jones
• 金额: $ 15.45万
• 依托单位: FLORIDA ATLANTIC UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-07-01 至 2026-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10434656
• 关键词: Active Learning; Address; Advisory Committees; Age; Area; Asian; Attitude; BRCA1 gene; BRCA2 gene; Behavior; Behavior Therapy; Behavioral; Belief; Biological; Black race; Blood; Breast Cancer Patient; Breast Cancer Prevention; Breast Cancer survivor; Cancer Control; Cancer Survivorship; Cancer-Predisposing Gene; Caring; Clinical; Communication; Conflict (Psychology); Cross-Sectional Studies; Cultural Diversity; Data; Decision Aid; Decision Making; Diagnosis; Educational workshop; Ethics; Ethnic group; Exposure to; Failure; Family; Family history of; Family member; Feasibility Studies; Feedback; Florida; Frequencies; Funding; Genes; Genetic; Genetic Research; Genetic Risk; Genomic medicine; Genomics; Goals; Health Disparities Research; Hereditary Breast and Ovarian Cancer Syndrome; Hispanic; Individual; Inherited; Intervention; Intervention Studies; Interview; K-Series Research Career Programs; Knowledge; Latina; Leadership; Malignant Neoplasms; Malignant neoplasm of ovary; Measures; Mentored Research Scientist Development Award; Methodology; Methods; Minority; Minority Women; National Cancer Institute; National Comprehensive Cancer Network; Not Hispanic or Latino; Oncogenes; Oncology; Online Systems; PALB2 gene; Participant; Pathogenicity; Patient Education; Patients; Penetrance; Population; Population Intervention; Predisposition; Preventive service; Productivity; Public Health; Race; Randomized; Randomized Controlled Trials; Recording of previous events; Reduce health disparities; Relative Risks; Research; Research Institute; Research Personnel; Research Project Grants; Risk; Risk Reduction; Science; Screening for cancer; Socioeconomic Status; Test Result; Testing; Time; Training; Underserved Population; United States National Institutes of Health; Variant; Woman; Writing; base; biobehavior; cancer genetics; cancer health disparity; cancer risk; career; clinical application; ethnic diversity; ethnic minority; experience; genetic panel test; genetic risk assessment; genetic testing; health disparity; malignant breast neoplasm; primary outcome; psychosocial; racial and ethnic; racial and ethnic disparities; racial minority; recruit; secondary outcome; skills; usability; user centered design; variant of unknown significance; young woman

Project Summary/Abstract: The introduction of multi-gene panel testing for hereditary breast and ovarian cancer (HBOC) syndrome has rapidly changed the clinical approach to genetic testing for patients and their families. Young breast cancer survivors (YBCS), diagnosed at age ≤50 years old, may have inherited a pathogenic/likely pathogenic (P/LP) variant in a breast cancer susceptibility gene, e.g., BRCA1, BRCA2, PALB2, etc. Recent studies have found suboptimal rates of genetic testing among young breast cancer patients with less than 50% completion rates for hereditary breast and ovarian cancer (HBOC) syndrome. Racial and ethnic disparities in genetic testing completion and results have been well documented. My long-term career goal is to become a leading independent investigator in breast cancer prevention and control, focusing on cancer genetics/genomics, risk communication, biobehavioral oncology, and reduction of cancer health disparities among racial/ethnic minority women. The specific aims are: In Aim 1, we propose to identify factors associated with completion of HBOC multigene panel testing, cancer risk-reducing behaviors, and family risk communication among racially/ethnically diverse young breast cancer survivors (YBCS) (N=300) within a sequential explanatory mixed-methods study. In addition, we will conduct qualitative interviews with (N=40) YBCS who completed genetic testing and those who have not completed genetic testing to explore knowledge, attitudes, beliefs about genetic testing, and to identify barriers and facilitators to the communication of genetic risk to their at-risk relatives. We will illuminate quantitative findings with qualitative data collected. In Aim 2, we will apply user-centered design to modify the existing genetic testing module within the RealRisks decision aid to meet the needs of YBCS and to add family risk communication content and conduct participatory workshops and usability testing (N=20). Lastly, in Aim 3, we will conduct a pilot randomized controlled trial of standard patient education alone or in combination with the modified RealRisks decision aid among racially/ethnically diverse YBCS. This career development award will provide me with protected time and the opportunity to pursue my training goals in several targeted areas: (1): Acquire and apply advanced statistical analytics for conducting mixed methodology and intervention research; (2) increase knowledge and skills in biobehavioral oncology, cancer survivorship, clinical application of genetic/genomic medicine, risk communication in families, cascade genetic testing, adapting web-based decision support interventions for underserved populations, and breast cancer health disparities; (3) gain didactic and experiential learning in the conduct of randomized controlled trials; and (4) develop leadership skills in the ethical conduct of scientific research, grant writing, increasing scholarly productivity, and management skills for scientific independence. In summary, this Mentored Research Scientist Development Award to Promote Diversity will provide me with invaluable experiences to successfully transition into a scientific independence, ultimately reducing health disparities.

项目摘要/摘要： 引入遗传性乳腺癌和卵巢癌（HBOC）综合征的多基因面板测试具有 迅速改变了患者及其家人基因测试的临床方法。年轻的乳腺癌 幸存者（YBC）在年龄≤50岁时诊断出来，可能遗传了一种致病性/可能的致病性（P/LP） 乳腺癌敏感性基因的变体，例如BRCA1，BRCA2，PALB2等。最近的研究发现 年轻乳腺癌患者的基因检测率少于50％ 遗传性乳腺癌和卵巢癌（HBOC）综合征。基因检测中的种族和种族差异 完成和结果已得到充分记录。我的长期职业目标是成为领导者 独立研究者预防乳腺癌和控制，重点是癌症遗传学/基因组学，风险 种族/族裔少数民族之间的沟通，生物行为肿瘤学和癌症健康分布的减少 女性。具体目的是：在AIM 1中，我们建议确定与HBOC完成相关的因素 多基因面板测试，降低癌症风险行为以及范围/种族之间的家庭风险交流 在一项顺序爆炸性混合方法研究中，潜水员年轻的乳腺癌存活（YBC）（n = 300）。 此外，我们还将对完成基因测试的（n = 40）YBC进行定性访谈， 他们尚未完成基因检测以探索知识，吸引，相信基因检测和 确定障碍和促进因素，以传达遗传风险对其处于危险的亲戚。我们会照亮 定量发现，收集了定性数据。在AIM 2中，我们将采用以用户为中心的设计来修改 Realrisks决策援助中的现有基因测试模块，以满足YBC的需求并增加家庭 风险交流内容和进行参与研讨会和可用性测试（n = 20）。最后，在AIM 3中， 我们将单独进行标准患者教育的试验随机对照试验，或与 在大致/种族的YBC中，修改了Realrisks的决策援助。这个职业发展奖将 为我提供受保护的时间，并有机会在几个目标领域实现我的培训目标：（1）： 获取并应用高级统计分析进行混合方法和干预研究； （2）提高生物行为肿瘤学，癌症生存，临床应用的知识和技能 遗传/基因组医学，家庭中的风险交流，级联基因测试，调整基于网络 对服务不足的人群和乳腺癌健康差异的决策支持措施； （3）增益教学 并在进行随机对照试验中经验丰富的学习； （4）在 科学研究的道德行为，授予写作，提高科学生产和管理技能 科学独立性。总而言之，这项指导的研究科学家发展奖旨在促进 多样性将为我提供宝贵的经验，以成功地过渡到科学独立性， 最终减少健康分布。