Enhancing at-Risk Latina Women's Use of Genetic Counseling for Hereditary Breast and Ovarian Cancer

加强拉丁裔高危女性对遗传性乳腺癌和卵巢癌的遗传咨询的使用

基本信息

批准号：
9254532
负责人：
Alejandra Hurtado de Mendoza Casaus
金额：
$ 7.92万
依托单位：
GEORGETOWN UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2016
资助国家：
美国
起止时间：
2016-04-05 至 2019-03-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/9254532
关键词：
Address Advisory Committees Attitude BRCA1 gene BRCA2 Mutation Baseline Surveys Behavior Behavior Therapy Belief Benefits and Risks Cancer Etiology Cessation of life Clinic Cognitive Communication Data Decision Making Diagnosis Emotional Emotions Ethnic group Face Focus Groups Future Gene Mutation Genetic Counseling Genetic Enhancement Genetic Materials Genetic Research Genetic screening method Genomics Goals Guidelines Healthy People 2020 Hereditary Breast Carcinoma High Prevalence High Risk Woman Immigrant Improve Access Individual Intervention Interview Intuition Knowledge Language Latina Malignant neoplasm of ovary Mammography Media Intervention Medical Methods Mexican Modeling Mutation Needs Assessment Outcome Participant Patients Perception Personality Phase Planning Theory Population Populations at Risk Prevention Preventive service Process Provider Psyche structure Psychosocial Factor Puerto Rican Randomized Controlled Trials Reporting Resources Risk Risk Assessment Risk Management Risk Reduction Self Efficacy Services Social isolation South American Survivors Testing Translating Trust Woman anticancer research base cancer diagnosis cancer genetics cancer risk cultural values emotional reaction experience follow up assessment genetic counselor genetic risk assessment high risk improved informant lifetime risk literacy malignant breast neoplasm multidisciplinary novel post intervention primary outcome psychosocial public health intervention screening secondary outcome social cognitive theory therapy design tool uptake

项目摘要

DESCRIPTION (provided by applicant): Breast cancer is the leading cause of cancer death among Latinas. Latinas also have a high prevalence of BRCA1/2 gene mutations, which increases their risk of developing breast and ovarian cancer. Genetic cancer risk assessments (GCRA) for hereditary breast and ovarian cancer (HBOC) can inform prevention and treatment decisions resulting in breast cancer risk reduction. Despite guidelines to refer women at a high risk of carrying a mutation to GCRA services, Latinas underuse these services. Reasons for Latinas' low GCRA participation include environmental (e.g. access, limited Spanish resources) and psychosocial factors (e.g. knowledge, literacy, emotional concerns). Our preliminary data suggest that improving access may not necessarily translate into uptake and that providers face challenges communicating about genomics with Latina. To develop effective HBOC communication it is key to understand Latinas' intuitive beliefs about GCRA, which are informed by prior experience and culture (mental models), as they impact how risk information is processed. It is also necessary to understand emotional reactions and potential ambivalence about GCRA. There have been few interventions designed to increase GCRA use in Latinas. To move the field forward we will conduct a novel risk communication intervention designed to target mental models, emotions, and ambivalence. Guided by the Theory of Planned Behavior and Social Cognitive Theory, we will conduct a two-phased mixed methods study. In Phase I we will interview key informants (n=10) and at- risk Latinas (n=20) to describe their mental models and other psychosocial factors. These data will inform the risk-benefit messages that will be evaluated and refined in focus groups (n=20) and delivered via Latina actors and a trusted medical personality in a media intervention (i.e.YouTube video). In Phase II we will pilot the intervention on at-risk Latinas (n=40). After the baseline, women will watch the 15-minute video, complete a follow-up assessment, and will be referred to a patient navigator for resource linkages. GCRA uptake will be assessed at 3-months. Our primary outcome is intentions to use GCRA. Specific aims are: Aim 1. Describe and portray Latinas' GCRA mental models (risks and benefits perceptions, emotions, etc.) Aim 2. Using data from Aim 1, develop the content of the risk-benefit communication messages for at-risk Latinas and incorporate these into a Spanish-language YouTube video. Aim 3. Evaluate the acceptability and pre-post intervention differences on the primary outcome (intentions to use GCRA) and intermediate outcomes (e.g. attitudes). We will also explore post-intervention GCRA uptake as a secondary outcome. H.2.1. The intervention will result in a significant increase in intentions to use GCRA H.2.2. The intervention will result in improvements in intermediate outcomes: knowledge, attitudes, self- efficacy, and ambivalence. H.2.3. After the intervention, 30% of Latinas will participate in GCRA by 3 months post-intervention. H.2.4. The majority (≥75%) will be satisfied with the intervention

描述（由申请人提供）：乳腺癌是拉丁裔癌症死亡的主要原因，BRCA1/2 基因突变的患病率也很高，这增加了他们患乳腺癌和卵巢癌的风险。遗传性乳腺癌和卵巢癌 (HBOC) 可以为预防和治疗决策提供信息，从而降低乳腺癌风险，尽管指南将携带突变的高风险女性转介至 GCRA 服务，但拉丁裔并未充分利用这些服务。拉丁裔 GCRA 参与率低的原因包括环境因素（例如，获取机会、有限的西班牙资源）和社会心理因素（例如，知识、读写能力、情感问题）。为了与拉丁裔进行有效的 HBOC 沟通，关键是要了解拉丁裔对 GCRA 的直觉信念，这些信念是由先前的经验和文化（心理模型）决定的，因为它们也会影响风险信息的处理方式。为了推动这一领域的发展，我们将针对心理模式、情绪和矛盾心理进行一种新颖的风险沟通干预。根据计划行为理论和社会认知理论，我们将进行一项两阶段混合方法研究，在第一阶段，我们将采访关键知情人 (n=10) 和高危拉丁裔 (n=20)，以描述他们的心理模式和心理模型。这些数据将告知风险收益信息，这些信息将在焦点小组（n=20）中进行评估和完善，并通过媒体干预（即第二阶段的 YouTube 视频）通过拉丁裔演员和值得信赖的医学人士传递。我们将对高危拉丁裔 (n=40) 进行试点干预，在基线后，女性将观看 15 分钟的视频，完成后续评估，并将被转介给患者导航员以获取 GCRA 资源链接。我们的主要结果是使用 GCRA 的意图，具体目标是：目标 1. 描述和描绘拉丁裔的 GCRA 心理模型（风险和收益认知、情绪等）目标 2. 使用目标中的数据。 1、为高危拉丁裔制定风险效益沟通信息的内容，并将其纳入西班牙语 YouTube 视频中。目标 3. 评估主要结果的可接受性和干预前后差异。（使用 GCRA 的意愿）和中间结果（例如态度）我们还将探讨干预后 GCRA 的采用情况作为次要结果 H.2.1 干预措施将导致使用 GCRA 干预的意愿显着增加。 H.2.3 干预后，30% 的拉丁裔将在 3 个月内参与 GCRA。 H.2.4. 大多数人（≥75%）会对干预感到满意。