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

• 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
• 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

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.

摘要 乳腺癌是黑人女性最常见的癌症。黑人女性遭受更具侵略性的形式 乳腺癌（如三阴性乳腺癌）的死亡率和复发率高于白色 同行此外，黑人妇女，特别是年轻黑人妇女， BRCA 1或BRCA 2基因突变，这显著增加了他们患遗传性乳腺癌的终生风险 卵巢癌（HBOC）虽然对携带突变高风险的女性进行遗传癌症风险评估 为未受影响的妇女提供幸存者治疗和风险管理决策的信息，黑人妇女利用不足 与白色女性相比，遗传咨询和检测差异的原因是 多方面的（如获取、缺乏知识）;然而，研究表明， 单靠这一点可能不足以解决差距问题。解决文化和心理社会因素可能会提高 接受遗传咨询和检测。需要文化上适当的信息。 我们经验丰富的多学科团队将进行风险沟通干预， 情感和文化价值。在两种循证理论（计划行为理论、社会行为理论）的指导下， 认知理论）和我们的初步数据，我们将进行一个两阶段的混合方法研究。在第一阶段，我们 将开发一个针对关键心理社会因素的叙事性YouTube视频干预。在第二阶段，我们将 对有HBOC风险的黑人妇女进行试点干预。女性将被随机分配到YouTube视频部门 （n=25）或印刷教育组（n=25）;所有女性将由调度员联系预约 遗传咨询我们的主要结果是在接受治疗后3个月进行遗传咨询。 干预或印刷材料;次要结果包括心理社会因素（如知识、自我效能）。 这项研究符合2020年健康人群的目标，以提高高危人群的GCT，以及国家优先事项 增加遗传学研究参与的多样性，同时将情感纳入癌症研究。 研究结果将为针对有遗传性乳腺癌风险的黑人妇女的行为干预提供新的策略 和卵巢癌，并将为未来的多中心试验提供信息。