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

在姑息治疗期间利用患者陈述的偏好来告知和支持代理决策：仪器开发和评估

• 批准号: 10819002
• 负责人: Winter Maxwell Thayer
• 金额: $ 4.42万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-05-01 至 2024-04-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10819002
• 关键词: Adult; African American; African American population; Anxiety; Area; Award; Cancer Etiology; Cancer Patient; Career Mobility; Cessation of life; Clinical; Clinical Cancer Center; Communication; Conflict (Psychology); Decision Making; Deterioration; Development; Device or Instrument Development; Diagnosis; Disease; Disease Progression; Documentation; Economics; Enrollment; Equity; Ethnic Population; Evaluation; Exclusion; Face; Family; Fellowship; Foundations; Future; Goals; Guilt; Health; Intervention; Interview; K-Series Research Career Programs; Malignant Neoplasms; Malignant neoplasm of prostate; Measures; Medical Records; Mental Depression; Mentorship; Methodology; Minority; Minority Groups; Modeling; National Cancer Institute; Neoplasms; Outcome; Outcome Measure; Output; Palliative Care; Parents; Participant; Partner Communications; Patient Outcomes Assessments; Patient Preferences; Patient-Centered Care; Patient-Focused Outcomes; Patients; Performance; Policy Developments; Practice Guidelines; Process; Productivity; Prostate; Provider; Proxy; Publishing; Qualitative Research; Recording of previous events; Recurrence; Reduce health disparities; Reporting; Research; Research Project Grants; Research Support; Resources; Role; Sampling; Solid; Source; Spirituality; Stress; Techniques; Testing; Training; Uncertainty; Validity and Reliability; advanced prostate cancer; anticancer treatment; cancer care; cancer diagnosis; cancer health disparity; cancer therapy; clinical care; clinical practice; design; disparity reduction; drug development; empowerment; experience; experimental study; improved; innovation; instrument; men; minority patient; mortality; palliative; patient engagement; patient oriented; preference; prevent; provider communication; racial population; randomized trial; recruit; stress reduction; support tools; tool

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.

项目摘要 我们将开发一个离散的选择实验（DCE）工具，以衡量提高前列腺的权衡 癌症患者在姑息性抗癌治疗方案中做出决定时会做出。三分之一 五年后，被诊断出患有晚期前列腺癌的患者还活着。在疾病进展过程中，患者的 治疗决策的能力通常会减弱和决策伙伴进行增加的治疗 决策责任。这可能会导致决策伙伴的烧伤升高，尤其是在有 有关患者治疗偏好的不确定性。我们提出的DCE将设计为引起患者 作为决策伙伴和临床团队的切实指南的治疗偏好 抗癌治疗决策。重要的是，发展过程将集中于包含 少数民族患者通过过度采样非裔美国人，并遵循由 与非裔美国人参与者进行研究。在AIM 1中，Q方法论和定性访谈技术将 与患者及其决策伙伴一起应用，以确定姑息治疗者的重要属性 治疗方案并探讨决策合作伙伴在决策中的角色。在AIM 2中，DCE工具将是 创建以及随后的二元组样本（患者和决策伙伴）将接受采访以吸引患者 及其在仪器开发方面的决策伙伴以及最初的有效性和可靠性试验。我们将 在发布最佳实践指南后，进行严格的过程来开发DCE工具。这 该研究项目的输出将包括量化患者姑息治疗的DCE工具 偏好。该项目将通过提供对患者姑息治疗的客观测量来影响临床实践 对决策伙伴和临床团队的抗癌治疗偏好，可以帮助指导治疗 决定。未来的研究将研究DCE在决策支持中的潜在作用。该奖项将支持 申请人过渡到职业所必需的研究，培训和专业发展 推进决策支持研究以减轻健康分配并减少患者的负面结果 以及他们的决策伙伴，包括压力，焦虑，内gui和抑郁。完成此研究金后， 申请人将为将来的研究奠定坚实的基础，以调查决策支持，从 在较大样本中测试开发的DCE工具的职业发展奖，以得出可推广的 结果。该应用与国家癌症研究所的科学优先领域保持一致， 由于我们对包容性抽样的独特关注，理解并减轻癌症健康差异。 申请人得到了很好的支持，可以通过赞助商和共同提案者实现这一目标，他们的历史悠久 在癌症健康分配领域有效地合作，并具有专业知识的合作者 与拟议研究有关的科学领域。