Developing a Decision Aid for Adolescent and Young Adult Female Cancer Survivors Considering Future Family-Building after Treatment

为考虑治疗后未来家庭建设的青少年和年轻女性癌症幸存者开发决策辅助工具

• 批准号: 9233234
• 负责人: Catherine Benedict
• 金额: $ 8.25万
• 依托单位: FEINSTEIN INSTITUTE FOR MEDICAL RESEARCH
• 依托单位国家: 美国
• 财政年份: 2017
• 资助国家: 美国
• 起止时间: 2017-01-01 至 2018-12-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9233234
• 关键词: Address; Adolescent and Young Adult; Adoption; Aftercare; Age; Anger; Anxiety; Applications Grants; Attention; Belief; Biological Preservation; Cancer Survivor; Caring; Child; Cognition; Cognitive; Conflict (Psychology); Continuance of life; Counseling; Data; Decision Aid; Decision Making; Development; Distress; Education; Emotional; Emotions; Evidence based intervention; Family; Female; Fertility; Fright; Future; Germ Cells; Goals; Infertility; Informal Social Control; Intervention; Interview; Investigation; Knowledge; Lead; Measures; Menopause; Mental Depression; Mission; Modeling; Normalcy; Participant; Patients; Play; Premature Menopause; Premature Ovarian Failure; Premenopause; Process; Public Health; Publishing; Randomized Controlled Trials; Recording of previous events; Recruitment Activity; Reproductive Health; Research; Research Priority; Risk; Services; Structure; Subgroup; Survivors; Testing; Time; TimeLine; Uncertainty; United States National Institutes of Health; Woman; Work; base; cancer therapy; career; chemotherapy; cost; early experience; emotional reaction; evidence base; evidence based guidelines; experience; high risk; infertility treatment; mortality; patient population; peer; preference; programs; psychosocial; reproductive; success; survivorship; theories; therapy design; tool; universal prevention; young woman

PROJECT SUMMARY/ABSTRACT There are more than 400,000 adolescent and young adult female (AYA-F) cancer survivors currently living in the US, and the potential loss of fertility has been described as one of the most distressing aspects of survivorship. The majority of AYA-Fs want to have children in the future. Four factors are critical in understanding how fertility issues play out in AYA-F survivorship: 1) the majority of patients do not preserve their fertility prior to treatment; 2) many will maintain reproductive potential after treatment but will be at risk for premature menopause; 3) lack of information, uncertainty, and distress lead to incorrect assumptions or avoidance of addressing fertility in survivorship; and 4) family-building is often not a focus as survivors prioritize normality and pursue education, careers, and develop intimate relationships in the same timeline as their peers The proposed study will be the first to explore how AYA-Fs make decisions about future family-building and their decision support needs, preferences, and perceived barriers. The goals of this study will be (1) to develop the first theoretically driven, evidence-based decision aid tool tailored to AYA-Fs making decisions about future family-building, and (2) to comprehensively evaluate AYA-Fs' decision support needs, preferences, and perceived barriers. We will recruit AYA-Fs (N=120) who completed gonadotoxic treatment, are pre- menopausal with no history of fertility preservation, and who want future children or are unsure about their reproductive plans. AYA-Fs will first complete a set of quantitative measures assessing fertility-related cognitions, emotions, and decision processes. We will conduct in-depth semi-structured interviews with a subset of participants (N=24-30) and use thematic content analysis to explore themes of decision-making and decision support needs, preferences, and perceived barriers. Qualitative themes will be validated with quantitative measures and will be used to identify whether AYA-Fs at-risk for high levels of decision distress may be identified. The need for additional support services will be explored and findings will inform the development of a large decision support intervention design. The proposed study is the first step in developing the first theoretically driven, evidence-based intervention to help AYA-Fs make informed, values-based decisions about their reproductive future, thereby avoid the potential negative psychosocial consequences of infertility.

项目总结/摘要 目前有超过40万名青少年和年轻成年女性（AYA-F）癌症幸存者生活在美国。 在美国，生育率的潜在损失被描述为最令人痛苦的方面之一， 生存。大多数AYA-F都希望将来有孩子。四个因素至关重要， 了解生育问题如何在AYA-F生存率中发挥作用：1）大多数患者不保留 治疗前的生育能力; 2）许多人在治疗后将保持生殖潜力，但将面临 过早绝经; 3）缺乏信息，不确定性和痛苦导致不正确的假设或 避免解决幸存者的生育问题;以及4）由于幸存者优先考虑，家庭建设往往不是重点 正常和追求教育，职业，并在同一时间轴发展亲密关系，因为他们的同龄人 这项拟议中的研究将是第一个探索AYA-F如何决定未来的家庭建设， 他们的决策支持需求，偏好和感知障碍。本研究的目的是（1）开发 第一个理论驱动的，基于证据的决策辅助工具，专为AYA-F制定未来决策 （2）全面评估AYA-F的决策支持需求，偏好， 感知障碍。我们将招募完成性腺毒性治疗的AYA-F（N=120）， 没有生育能力保留史的绝经期妇女，以及想要未来孩子或不确定他们的生育能力的妇女。 生殖计划AYA-F将首先完成一套量化措施，评估与生育有关的 认知、情感和决策过程。我们将进行深入的半结构化访谈， 参与者的子集（N=24-30），并使用主题内容分析来探讨决策和 决策支持需求、偏好和感知障碍。定性主题将得到验证， 定量措施，并将用于确定是否AYA-F在高水平的决策困扰的风险 可以识别。将探讨是否需要额外的支助服务，研究结果将通报 开发大型决策支持干预设计。这项研究是发展的第一步。 第一个理论驱动的，以证据为基础的干预，以帮助AYA-F作出知情的，基于价值观的 决定其生育未来，从而避免潜在的负面心理社会后果， 不孕