Barriers to Knowledge of Family History and Family Communication among Sexual Minorities and the Implications in the Context of Hereditary Cancer Syndromes

性少数群体了解家族史和家庭沟通的障碍及其对遗传性癌症综合征的影响

• 批准号: 9930299
• 负责人: KATRINA A. GODDARD
• 金额: $ 9.96万
• 依托单位: KAISER FOUNDATION RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2013
• 资助国家: 美国
• 起止时间: 2013-06-14 至 2021-05-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9930299
• 关键词: Address; Administrative Supplement; Age of Onset; Algorithms; Area; Biological; Bisexual; Cancer Family; Caring; Clinical; Collaborations; Communication; Data; Diagnosis; Enrollment; Ensure; Family; Family Cancer History; Family Relationship; Family history of; Family member; Female; Foundations; Frequencies; Funding; Future; Gays; Gender; Genetic Counseling; Genetic Risk; Genetic Services; Genetic screening method; Genomic medicine; Goals; Health; Healthcare; Hereditary Breast and Ovarian Cancer Syndrome; Hereditary Malignant Neoplasm; Hereditary Neoplastic Syndromes; Hereditary Nonpolyposis Colorectal Neoplasms; Heterosexuals; Improve Access; Incidence; Individual; Intervention; Interview; Knowledge; Lead; Lesbian; Life; Malignant Neoplasms; Methods; Operative Surgical Procedures; Parents; Participant; Pathogenicity; Patient Recruitments; Patient Self-Report; Patient-Centered Care; Patients; Population; Population Heterogeneity; Prevalence; Publishing; Qualitative Methods; Recording of previous events; Reporting; Research; Risk; Risk Assessment; Savings; Second Degree Relative; Sex Orientation; Sexual and Gender Minorities; Subgroup; Surveys; United States National Institutes of Health; Variant; Work; cancer care; cancer diagnosis; cancer genetics; cancer risk; cancer type; clinical care; experience; genetic risk assessment; health assessment; health disparity; high risk; interest; male; parent grant; parent project; patient engagement; prevent; programs; recruit; sexual minority; shared decision making; social stigma; success

PROJECT SUMMARY/ABSTRACT: Hereditary breast and ovarian cancer and Lynch syndrome are the two most common hereditary cancer syndromes. They have an estimated combined prevalence of about 1 in 200 individuals. Current approaches to identify individuals who should be referred for genetic counseling and testing rely on knowledge of a family history of cancer, including cancer type and age of onset in first- and second-degree relatives. Thus, lack of knowledge of family cancer history may prevent appropriate assessment for hereditary cancer risk. This could lead to a missed opportunity to implement life-saving clinical interventions, such as risk-reducing surgery, and allow for at-risk biological family members to receive information on familial cancer risk. Thus, open family communication about health history and genetic risk are a significant factor in guiding appropriate referrals for genetic counseling and testing to diagnose individuals at increased genetic cancer risk. Sexual minority individuals, however, may have limited knowledge and access to cancer histories among family members due to increased rates of stigma and intolerance that may lead to strained or estranged family relationships. The proposed study will explore knowledge, experiences, and barriers and facilitators to family cancer information among sexual minorities that may lead to health disparities in the context of assessment and communication of hereditary cancer risk. This study aligns with the specific aims of the parent grant, the Cancer Health Assessments Reaching Many (CHARM) study, which aims to increase access to genetic testing for hereditary cancer syndromes across diverse populations that may experience health disparities. We will recruit 20 CHARM participants to perform in-depth, semi- quantitative interviews to explore domains associated with family communication and cancer risk assessments. This work will provide an important foundation to understanding barriers in the context familial cancer risk and guide how to tailor access to genetic cancer risk information to better address the needs of sexual minority individuals.

项目总结/摘要：遗传性乳腺癌和卵巢癌以及Lynch综合征是两种 最常见的遗传性癌症综合征。据估计，他们的合并患病率约为1/200 个体目前的方法，以确定个人谁应该被称为遗传咨询和 检测依赖于对癌症家族史的了解，包括癌症类型和首次发病年龄， 二级亲属。因此，缺乏对家族癌症史的了解可能会阻止适当的 评估遗传性癌症风险。这可能导致错失实施挽救生命的临床治疗的机会。 干预措施，如降低风险的手术，并允许有风险的生物家庭成员接受 关于家族性癌症风险的信息。因此，关于健康史和遗传风险的开放式家庭沟通是 一个重要的因素，指导适当的转介遗传咨询和检测，以诊断个人在 增加遗传性癌症风险。然而，性少数群体的知识和机会可能有限， 由于污名化和不容忍的比率增加，可能导致家庭成员中的癌症史， 紧张或疏远的家庭关系。拟议的研究将探讨知识，经验， 性少数群体中可能导致健康的家庭癌症信息的障碍和促进因素 在遗传性癌症风险评估和沟通方面存在差异。这项研究符合 父母补助金的具体目标，癌症健康评估达到许多（CHARM）研究， 旨在增加对不同人群的遗传性癌症综合征进行基因检测的机会， 可能会经历健康差异。我们将招募20名CHARM参与者进行深入，半- 定量访谈，探索与家庭沟通和癌症风险相关的领域 评估。这项工作将提供一个重要的基础，以了解障碍的背景下，家庭 癌症风险，并指导如何定制获得遗传癌症风险信息，以更好地满足 性少数群体。