Peer Support for Young Adult Women with High Breast Cancer Risk

对乳腺癌高风险年轻女性的同伴支持

• 批准号: 10542378
• 负责人: Suzanne C. O'Neill
• 金额: $ 35.48万
• 依托单位: GEORGETOWN UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-01-01 至 2024-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10542378
• 关键词: Address; Affective; Age; BRCA mutations; Breast Cancer Risk Factor; Breast Magnetic Resonance Imaging; Cancer Burden; Cancer Center; Cancer Control; Cancer Survivor; Caring; Clinical; Clinical Trials; Communities; Conflict (Psychology); Coping Skills; Counseling; Data; Decision Making; Development; Diagnosis; Disadvantaged; Distress; Emotional; Engineering; Equation; Face; Family; Family Planning; Funding; Genes; Genetic; Genetic Counseling; Genetic Predisposition to Disease; Genomic medicine; Health; Health Personnel; Hereditary Breast Carcinoma; Hereditary Breast and Ovarian Cancer Syndrome; High-Risk Cancer; Intervention; Learning; Life Cycle Stages; Literature; Magnetic Resonance Imaging; Malignant Neoplasms; Mammography; Manuals; Mediating; Medical; Memorial Sloan-Kettering Cancer Center; Modeling; Operative Surgical Procedures; Outcome; Participant; Partner in relationship; Pattern; Persons; Population; Printing; Problem Solving; Process; Protocols documentation; Quality of life; Randomized; Recommendation; Reporting; Risk; Risk Estimate; Risk Management; Risk Reduction; Second Degree Relative; Self Efficacy; Services; Site; Social support; Surveys; Target Populations; Telephone; Testing; Training; Uncertainty; United States National Academy of Sciences; Woman; Work; behavioral outcome; brca gene; cancer care; cancer genetics; cancer prevention; cancer risk; career; clinically significant; coping; empowerment; evidence base; expectation; experience; feasibility trial; genetic testing; high risk; improved; improved outcome; indexing; innovation; interest; intervention effect; malignant breast neoplasm; meetings; mutation carrier; peer; peer coaching; peer support; population health; premature; programs; psychologic; psychological distress; psychosocial; recruit; response; screening; skills; stress reduction; telephone coaching; theories; treatment as usual; trial enrollment; ultrasound; uptake; young adult

BRCA1/2 mutation carriers have highly elevated odds of developing hereditary breast and ovarian cancer, as may their first- and second-degree relatives. The National Academies of Sciences Engineering and Medicine’s Genomics and Population Health Action Collaborative highlights the testing of carriers’ relatives and their uptake of screening and risk-reducing surgeries as a primary way that genetics can contribute to the reduction of population cancer burden. Patterns of testing over the past decade have shifted to include more younger and cancer-unaffected women to capitalize on this cancer prevention opportunity. However, interventions have not kept pace with this changing landscape, as there are currently no funded trials that meet the unique clinical, developmental and psychological needs of young adult relatives (YARs) of mutation carriers. Our pilot data suggests that YARs report high levels of distress and desire to seek HBOC risk information and emotional support beyond their healthcare providers and families—especially support from knowledgeable peers who can relate to their experiences and offer neutral grounding and objective guidance about coping strategies. Peer support is a promising psychosocial cancer care approach that could fill this void. However, few evidence-based standards inform its practice. In response to this cancer control challenge, we developed a new, fully manualized/scripted intervention for YARs called “Peers and Cancer Empowerment” (PeACE). PeACE is grounded in evidence-based psychosocial telephone counseling protocols for HBOC distress reduction. We adapted those protocols for our target population through a systematic approach without contradicting their core features. PeACE includes streamlined telephone counseling delivered by well-trained community peer coaches. Session content incorporates coping training for HBOC stress reduction, and decision making and problem solving training about confronting and managing cancer risk. We will rigorously test PeACE’s efficacy in an RCT to improve HBOC-related outcomes for YARs. Trial participants are randomized to an intervention or equated control condition, and followed for up to 12 months. We hypothesize that PeACE better reduces cancer-specific and general distress, uncertainty, and decision conflict, as well as increased uptake of genetic counseling. This innovative project expands capacity to address psychological distress management and related outcomes in persons living with HBOC risk.

BRCA 1/2突变携带者患遗传性乳腺癌和卵巢癌的几率很高， 可能是他们的一级和二级亲属美国国家科学院、工程院和医学院 基因组学和人口健康行动合作强调对携带者亲属的检测及其吸收 筛查和降低风险的手术是遗传学有助于减少 人口癌症负担。过去十年的测试模式已经转变， 未受癌症影响的妇女利用这一预防癌症的机会。然而，干预措施并没有 跟上这一不断变化的形势，因为目前没有资助的试验，以满足独特的临床， 突变携带者的年轻成年亲属（YAR）的发展和心理需求。我们的试点数据 表明，YAR报告高水平的痛苦和寻求HBOC风险信息和情感的愿望， 他们的医疗保健提供者和家庭以外的支持，特别是来自知识渊博的同行的支持， 与他们的经历联系起来，并就应对策略提供中立的基础和客观的指导。对等 支持是一种很有前途的心理社会癌症护理方法，可以填补这一空白。然而，很少有基于证据的 标准指导其实践。为了应对这一癌症控制挑战，我们开发了一种新的， 为YAR提供手动/脚本干预，称为“Peers and Cancer Empowerment”（PeACE）。和平是 基于循证心理社会电话咨询协议的HBOC痛苦减少。我们 通过系统的方法，在不违背其核心的情况下， 功能. PeACE包括由训练有素的社区同伴教练提供的简化电话咨询。 会议内容包括应对培训HBOC压力减轻，决策和问题 解决关于面对和管理癌症风险的培训。我们将在随机对照试验中严格测试PeACE的疗效 改善年度报告中与HBOC相关的结果。试验参与者被随机分配至干预组或等同组 对照条件下，并随访长达12个月。我们假设PeACE能更好地减少癌症特异性 和一般的痛苦，不确定性和决策冲突，以及遗传咨询的增加。这 创新项目扩大了处理心理困扰管理和相关成果的能力， 有HBOC风险的人。