Improving Uptake of Genetic Cancer Risk Assessment in African American Women

提高非裔美国女性对遗传癌症风险评估的接受度

基本信息

批准号：
9896547
负责人：
VANESSA B SHEPPARD
金额：
$ 23.07万
依托单位：
VIRGINIA COMMONWEALTH UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2019
资助国家：
美国
起止时间：
2019-12-12 至 2022-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9896547
关键词：
Address Affect African American Appointment Appointments and Schedules Awareness BRCA1 gene BRCA2 Mutation Baseline Surveys Behavior Behavior Therapy Breast Cancer Risk Factor Breast Cancer survivor Cancer Patient Cognitive Communication Communication Tools Control Groups Data Decision Making Diagnosis Disease Education Emotions Epidermal Growth Factor Estrogen Receptors Ethnic group Focus Groups Fright Future Genetic Counseling Genetic Enhancement Genetic Research Genomics Goals Happiness Healthy People 2020 Hereditary Breast Carcinoma Hereditary Breast and Ovarian Cancer Syndrome High Prevalence High Risk Woman Human Individual Inherited Intervention Knowledge Literature Malignant Female Reproductive System Neoplasm Malignant Neoplasms Malignant neoplasm of ovary Medical Methods Morality Multicenter Trials Mutation National Comprehensive Cancer Network Not Hispanic or Latino Outcome Participant Pathogenicity Phase Planning Theory Populations at Risk Progesterone Receptors Psychosocial Factor Randomized Reading Recurrence Reporting Research Resources Risk Risk Assessment Risk Management Schedule Self Efficacy Survivors Testing Treatment Efficacy Variant Woman advanced breast cancer anticancer research arm base cancer diagnosis cancer genetics cancer risk comparative efficacy cultural values data format effective intervention efficacy testing emotional reaction evidence base experience follow up assessment genetic counselor genetic testing group intervention hereditary risk improved lifetime risk malignant breast neoplasm mortality multidisciplinary primary outcome psychosocial racial and ethnic racial disparity randomized trial secondary outcome social cognitive theory successful intervention theories therapy design treatment arm trend triple-negative invasive breast carcinoma uptake

项目摘要

Abstract Breast cancer is the most diagnosed cancer for Black women. Black women suffer from more aggressive forms of breast cancer (e.g. triple negative breast cancer) and higher morality and recurrence rates than their White counterparts. Additionally, Black women, specifically young Black women, have the highest prevalence of BRCA1 or BRCA2 gene mutations, which significantly increases their lifetime risk of developing hereditary breast and ovarian cancer (HBOC). While genetic cancer risk assessments for women at high risk of carrying a mutation informs treatment for survivors and risk management decisions in unaffected women, Black women underutilize this resource when compared to White women. Reasons for disparities in genetic counseling and testing are multifaceted (e.g. access, lack of knowledge); however, studies indicate that increasing access and awareness alone may be insufficient to address disparities. Addressing cultural and psychosocial factors may enhance uptake of genetic counseling and testing. Culturally appropriate information is needed. Our experienced multidisciplinary team will conduct a risk communication intervention designed to target emotions, and cultural values. Guided by the two evidenced-based theories (Theory of Planned Behavior, Social Cognitive Theory) and our preliminary data, we will conduct a two-phased mixed methods study. In Phase I we will develop a narrative YouTube video intervention that will target key psychosocial factors. In Phase II we will pilot the intervention in Black women at risk of HBOC. Women will be randomized either the YouTube video arm (n=25) or a Print education arm (n=25); all women will be contacted by a scheduler to make an appointment for genetic counseling. Our primary outcome is genetic counseling at 3-months following the receipt of the intervention or print materials; secondary outcomes include psychosocial factors (e.g. knowledge, self-efficacy). This study meets the Healthy People 2020 goals to enhance GCT in at-risk populations, and the national priorities to increase diversity in genetics research participation while incorporating emotions into cancer research. Findings will inform new strategies for behavioral interventions targeting Black women at-risk of hereditary breast and ovarian cancer and will inform a future multicenter trial.

抽象的乳腺癌是黑人妇女诊断最多的癌症。黑人妇女患有更具侵略性的形式乳腺癌（例如三重阴性乳腺癌）和比白色更高的道德和复发率更高同行。此外，黑人妇女，特别是年轻的黑人妇女，患病率最高 BRCA1或BRCA2基因突变，这大大增加了其遗传性乳房的寿命风险和卵巢癌（HBOC）。而遗传癌症的风险评估是对携带突变高风险的女性的风险评估向幸存者的治疗和未受影响的妇女的风险管理决策提供信息，黑人妇女不足与白人妇女相比，该资源。遗传咨询和测试差异的原因是多方面（例如访问，缺乏知识）；但是，研究表明，提高访问和意识单独可能不足以解决差异。解决文化和社会心理因素可能会增强遗传咨询和测试的吸收。需要在文化上适当的信息。我们经验丰富的多学科团队将进行旨在针对的风险交流干预措施情绪和文化价值观。在两种基于证据的理论（计划行为，社会理论）的指导下认知理论）和我们的初步数据，我们将进行两步的混合方法研究。在第一阶段我们将开发叙事性的YouTube视频干预措施，以针对关键的社会心理因素。在第二阶段，我们将企业对有HBOC风险的黑人妇女进行干预。妇女将被随机分配YouTube视频臂（n = 25）或印刷教育部门（n = 25）;调度员将与所有妇女联系以预约遗传咨询。我们的主要结果是在收到后3个月的遗传咨询干预或印刷材料；次要结果包括社会心理因素（例如知识，自我效能感）。这项研究符合健康人2020年的目标，以增强高危人群的GCT和国家优先事项为了增加遗传学研究参与的多样性，同时将情绪纳入癌症研究。调查结果将为针对黑人妇女处于遗传性乳房的黑人妇女的行为干预措施提供新的策略和卵巢癌，并将为未来的多中心试验提供信息。