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Improving Genetic Counseling for BRCA+ Mothers

改善 BRCA 母亲的遗传咨询

基本信息

批准号：
10079017
负责人：
BETH N PESHKIN
金额：
$ 36.22万
依托单位：
GEORGETOWN UNIVERSITY
依托单位国家：
美国
项目类别：
财政年份：
2020
资助国家：
美国
起止时间：
2020-01-02 至 2024-12-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10079017
关键词：
Address Adolescent and Young Adult Adoption Adult Adult Children Aftercare Age Ally Anxiety Area Awareness BRCA mutations Behavior Therapy Behavioral Blood Breast Cancer Control Caregivers Caring Child Child Rearing Clinical Cognitive Communication Communities Complex Conflict (Psychology)Coping Skills Counseling Critical Care Data Daughter Decision Making Disclosure Distress Face Family Family history of Feeling Female Adolescents Future Gene Mutation Genes Genetic Genetic Counseling Goals Guilt Health Healthy People 2020 Hereditary Malignant Neoplasm Inherited Intervention Knowledge Malignant Neoplasms Malignant neoplasm of ovary Mediating Medical Mental Depression Modeling Monitor Mothers Notification Oncology Operative Surgical Procedures Outcome Parents Participant Patients Pilot Projects Population Genetics Predisposition Prevention Protocols documentation Psychosocial Assessment and Care Public Health Public Health Practice Randomized Reporting Resources Risk Self Efficacy Self Management Service delivery model Siblings Site Son Stress Structure Telephone Test Result Testing Thinking Time Training Uncertainty Well in self Woman Work anticancer research arm base brca gene cancer genetics cancer prevention cancer risk communication aid communication behavior coping efficacy testing evidence base experience genetic counselor genetic information genetic testing genomic tools health goals high risk improved intergenerational kindred lifetime risk malignant breast neoplasm member mutation carrier peer peer coaching peer support preference prevent psychological distress psychosocial randomized trial recruit response screening skills social standard care telephone coaching treatment as usual

项目摘要

Women carrying deleterious BRCA mutations are expected to notify their relatives about the family's inherited cancer susceptibility. This is important because relatives have a 50% chance of harboring the same cancer- causing genes, and may themselves be at risk for breast and other cancers. Patients sometimes collaborate with a genetic counselor to follow this advice—disclosing their BRCA+ status to parents, adult siblings, and additional members of their kindred. Evidence suggests women with children also want to inform their daughters and sons about maternal BRCA+ genetic test results, but carrier mothers are often psychologically distressed after testing and have difficulty navigating the social and medical implications for their adolescent and young adult (AYA) offspring. It is common for these mothers to experience uncertainty over early notification of BRCA+ to AYAs, manage their own thoughts/feelings about familial cancer, and maintain open the lines of communication with relatives without `keeping secrets' from their own children. Although genetic counseling assists with aspects of this decisional and psychosocial burden, there are no evidence-based resources specifically devoted to ameliorating mothers' anxiety/depression, worry, and self-blame and traverse complex questions surrounding BRCA+ status notification to their AYAs. In response to this gap, we developed and successfully piloted a new, fully manualized psychosocial support and family communication decision making protocol for BRCA+ mothers with AYA children. Our intervention is theoretically-grounded, and deeply attends to self-management needs, hereditary cancer stresses, and age-appropriate AYA concerns. Following standard genetic counseling, it adds 3 sessions of brief telephone counseling delivered by well- trained peers (parent coaches) who are also BRCA+ mothers themselves. Coaching covers: a) maternal socioemotional support, b) communication decision making training, and c) coping skill-building. We will rigorously test for efficacy in a 2-arm RCT to determine improvements in maternal psychosocial functioning and parent-AYA child communication outcomes after standard genetic counseling. BRCA+ mothers with AYA daughters and sons will be recruited from cancer genetic testing centers in the greater DC and Hackensack, NJ areas, randomized to an intervention or usual care control condition, and monitored for up to 6 months post- treatment. Our results should provide evidence for favorably impacting this population's genetic counseling outcomes, with a disseminable intervention poised for adoption. Peer support may be conventional within the breast cancer community at-large, but it remains an unproven treatment ally in genetically informed oncology care. The proliferation of genetic tests, and the modest genetic counseling workforce, necessitate new healthcare delivery models that leverage these and other accessible resources. Targeted peer coaching with an empirical decision support aide could prove to be a viable extension of genetic counseling efforts with BRCA+ mothers, and a complementary approach to hereditary cancer prevention and control in public health settings.

携带有害BRCA突变的女性应该将家族遗传情况告知亲属