Using Patients' Stated Preferences to Inform and Support Proxy Decision-making during Palliative Treatment: Instrument Development and Evaluation

项目摘要 我们将开发一种离散选择实验(DCE)仪器来测量促进前列腺癌的权衡 癌症患者在选择姑息性抗癌治疗方案时会做出决定。每三个人中只有一个 被诊断为晚期前列腺癌的患者五年后仍活着。在疾病发展过程中，患者的 治疗决策的能力往往减弱，决策伙伴采取更多的治疗 决策责任。这可能会增加决策合作伙伴的负担，尤其是在 关于患者治疗偏好的不确定性。我们建议的DCE将旨在吸引患者 治疗偏好作为未来姑息性治疗的决策合作伙伴和临床团队的有形指南 抗癌治疗决策。重要的是，开发过程将重点放在纳入 通过过度抽样非裔美国人和遵循由 与非洲裔美国人参与者一起进行研究。在目标1中，Q方法和定性访谈技巧将 适用于患者及其决策伙伴，以确定姑息性抗癌的重要属性 治疗选择和探索决策伙伴在决策制定中的作用。在目标2中，将使用DCE仪器 创建并随后将采访DIAD的样本(患者和决策伙伴)，以吸引患者 以及他们在仪器开发和初步试验中的决策伙伴，以确保有效性和可靠性。我们会 按照已公布的最佳实践指南，采取严格的流程来开发DCE工具。这个 这项研究项目的成果将包括一种DCE仪器，用于量化患者的姑息抗癌治疗 偏好。该项目将通过提供患者姑息治疗的客观指标来影响临床实践。 帮助指导治疗的决策合作伙伴和临床团队对抗癌治疗的偏好 决定。未来的研究将探讨DCES在决策支持中的潜在作用。这一奖项将支持 申请人进入职业生涯所需的研究、培训和专业发展 推进决策支持研究，以缩小健康差距，减少患者的负面后果 以及他们的决策伙伴，包括压力、焦虑、内疚和抑郁。在完成这一团契后， 申请者将为未来调查决策支持的研究奠定坚实的基础，从 职业发展奖，在更大的样本中测试开发的DCE仪器，以得出可推广的 结果。这项申请与国家癌症研究所科学预防优先领域保持一致， 由于我们对包容性抽样的独特关注，我们理解并缓解了癌症健康差异。这个 申请者与具有悠久历史的赞助人和共同赞助人共同支持以实现这一目标 在癌症健康差异领域进行卓有成效的合作，以及在 与拟议研究相关的科学领域。

Project Summary We will develop a discrete choice experiment (DCE) instrument to measure the trade-offs that advanced prostate cancer patients make when deciding among palliative anti-cancer treatment options. Only one out of three patients diagnosed with advanced prostate cancer is alive after five years. During disease progression, patient’s capacity for treatment decision making often wanes and decision partners undertake increased treatment decision making responsibility. This can result in elevated burden for decision partners, especially when there is uncertainty regarding the patients’ treatment preferences. Our proposed DCE will be designed to elicit patient treatment preferences to serve as a tangible guide to decision partners and the clinical team for future palliative anti-cancer treatment decision making. Importantly, the development process will focus on the inclusion of minority patients by oversampling African Americans and following models of decision making informed by research with African American participants. In Aim 1, Q methodology and qualitative interview techniques will be applied with patients and their decision partner to identify the important attributes of palliative anti-cancer treatment options and explore decision partners role in decision making. In Aim 2, a DCE instrument will be created and a subsequent sample of dyads (patient and decision partner) will be interviewed to engage patients and their decision partner in instrument development and initial piloting for validity and reliability. We will undertake a rigorous process to develop the DCE instrument following published best-practice guidelines. The output of this research project will include a DCE instrument to quantify patient’s palliative anti-cancer treatment preferences. This project will impact clinical practice by providing an objective measure of patients’ palliative anti-cancer treatment preferences to decision partners and the clinical team that can help guide treatment decisions. Future research will investigate the potential role of DCEs in decision support. This award will support the research, training, and professional development necessary for the Applicant to transition into a career advancing decision support research to mitigate health disparities and reduce negative outcomes for patients and their decision partners, including stress, anxiety, guilt, and depression. Upon completion of this Fellowship, the Applicant will have a solid foundation for future research to investigate decision support, beginning with a career development award to test the developed DCE instrument in larger samples to derive generalizable results. This application is aligned with the National Cancer Institute Scientific Priority Area of preventing, understanding, and mitigating cancer health disparities due to our unique focus on inclusive sampling. The Applicant is well supported to accomplish this goal with a Sponsor and Cosponsor who have a long history of working together productively in the area of cancer health disparities, and collaborators with expertise in the scientific areas relevant to the proposed research.