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.

BRCA1/2突变携带者的发展遗传性乳腺癌和卵巢癌的几率高度升高，如 愿他们的一级和二级亲戚。国家科学工程与医学学院 基因组学和人口健康行动协作强调了载体亲戚的测试及其吸收 将筛查和降低风险手术作为遗传学可以减少遗传学的主要方式 人口癌症伯恩。过去十年的测试模式已经转变为包括更多年轻人和 癌症无害的妇女利用这种预防癌症的机会。但是，干预措施还没有 跟上这种不断变化的景观的步伐，因为目前尚无符合独特临床的资金试验， 突变携带者的年轻成人亲戚（YARS）的发展和心理需求。我们的飞行员数据 建议YARS报告高水平的困扰和寻求HBOC风险信息和情感的愿望 超越其医疗保健提供者和家庭的支持，尤其是知识渊博的同龄人的支持 与他们的经验有关，并提供有关应对策略的中性基础和客观指导。 支持是一种有望填补这一空白的有望的社会心理癌症护理方法。但是，很少有证据 标准为其实践提供了信息。为了应对这一癌症控制挑战，我们开发了一个全新的，充分的 对YAR的手动/脚本干预称为“同伴和癌症赋权”（和平）。和平是 基于基于证据的心理心理电话咨询协议，用于减少HBOC遇险。我们 通过系统的方法为我们的目标人群调整了这些协议而不与核心相矛盾 特征。和平包括由训练有素的社区同伴教练提供的简化电话咨询。 会话内容包括应对HBOC压力减轻以及决策和问题的应对培训 解决有关面对和管理癌症风险的培训。我们将严格测试和平在RCT中的效率 为了改善与HBOC相关的院子的结果。试用参与者被随机分配给干预或同等学历 控制条件，最多持​​续12个月。我们假设和平更好地降低了癌症特定的 以及一般的困扰，不确定性和决策冲突，以及增加遗传咨询的吸收。这 创新项目扩大了解决心理困扰管理和相关结果的能力 患有HBOC风险的人。