Measuring Preferences for Fertility in Breast Cancer for a Decision Aid

描述(申请人提供)：被诊断患有乳腺癌的女性不仅必须面临各种侵入性、漫长的治疗，包括手术、化疗和放射治疗，而且她们还经常面临这些治疗对她们生育能力的威胁。接受过癌症治疗的年轻女性始终认为生育问题是最令人担忧的问题之一，而且这些担忧并不会随着时间的推移而减弱。保留生育能力的选择是可用的，但寻求可用的选择的决定很复杂，因为这些决定可能会影响妇女复发、死亡的风险和她的生活质量。当没有单一的选择可以提倡时，必须将妇女的偏好纳入决策过程。决策辅助工具可以帮助做出艰难的决策，这些决策涉及评估不确定的科学证据和权衡治疗方案的好处和风险。他们已被发现是可以接受的患者和可行的实施。该项目的具体目标是：1)通过领导焦点小组探索知识、个人风险信息和竞争因素的权重，表征年轻(21-45岁)乳腺癌患者关于保留生育的决策需求；2)基于从定性研究中收集的信息，开发乳腺癌妇女保留生育决策的决策分析模型；3)使用预期效用理论中的时间权衡方法，衡量被诊断为乳腺癌的年轻女性对保留生育的偏好；4)使用决策模型开发用于保留生育决策的决策辅助工具；5)在一小部分被诊断患有乳腺癌的年轻女性中进行试点测试，这些年轻女性有失去生育的风险，正面临着保留生育的决定。这项研究将是在乳腺癌人群中明确纳入患者偏好的保留生育能力决定的第一个决策辅助。从这项研究中获得的信息将对开发未来妇女作出生育决策的工具非常有价值，并将对乳腺癌幸存者的生活产生有益影响，并减轻与癌症治疗相关的发病率。

DESCRIPTION (provided by applicant): Women diagnosed with breast cancer must not only face a variety of invasive, lengthy treatments that can involve surgery, chemotherapy, and radiation therapy, they also often face a threat to their fertility as a result of these treatments. Young women who have undergone cancer treatment consistently identify fertility concerns among the most troubling issues and these concerns do not abate with time. Options for preserving fertility are available, but decisions to pursue available options complicated as these decisions potentially affect a woman's risk for recurrence, mortality, and her quality of life. When there is no single option to be advocated, it is imperative to incorporate a woman's preferences into the decision making process. Decision aids can assist with difficult decisions that involve evaluating uncertain scientific evidence and weighing the benefits and risks of treatment options. They have been found to be acceptable to patients and feasible to implement. The Specific Aims of this project are to: 1) Characterize the decision making needs of young (aged 21-45) breast cancer patients regarding fertility preservation by conducting focus groups that explore the knowledge, personal risk information, and weighing of competing factors; 2) Develop a decision analytic model of the fertility preservation decision in women with breast cancer, based on information gleaned from qualitative studies; 3) Measure the preferences for fertility preservation in young women diagnosed with breast cancer, using the Time Trade-Off method derived from expected utility theory; 4) Develop a decision aid for the fertility preservation decision using the decision model; 5) Pilot test the decision aid in a small sample of young women diagnosed with breast cancer who are at risk of fertility loss and are facing the fertility preservation decision. This research will be the first decision aid for fertility preservation decisions in a breast cancer population that specifically incorporates patient preferences. The information gained from this research will be invaluable in developing future tools for women to make decisions regarding fertility and will have a beneficial effect on breast cancer survivors' lives, and relieve morbidity associated with cancer treatments.