Patient Priorities in Lung Transplant: Quality of Life Outcomes to Inform Decision Making

肺移植中患者的优先事项：生活质量结果为决策提供依据

• 批准号: 10592041
• 负责人: Ilene L. Hollin
• 金额: $ 16.91万
• 依托单位: TEMPLE UNIV OF THE COMMONWEALTH
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-02-01 至 2028-01-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10592041
• 关键词: Accounting; Address; Affect; Applied Skills; Bass; Benefits and Risks; Caregivers; Caring; Cessation of life; Chronic Phase; Clinical; Clinical Trials; Communication; Communities; Complex; Comprehension; Conflict (Psychology); Data; Decision Aid; Decision Making; Decision Theory; Dedications; Development; Development Plans; Diagnosis; Drops; Evaluation; Exercise; Extramural Activities; Face; Family; Funding; Future; Goals; Grant; Health; Health Services; Infection; Instruction; International; Interview; Knowledge; Lead; Life; Life Expectancy; Life Extension; Lung; Lung Transplantation; Lung diseases; Measures; Medical; Mentors; Mentorship; Methods; Organ Donor; Outcome; Outcome Measure; Outcomes Research; Pathway interactions; Patient Care; Patient-Centered Care; Patient-Focused Outcomes; Patients; Phase; Physicians; Play; Process; Productivity; Prospective cohort; Qualitative Methods; Quality of life; Recording of previous events; Research; Research Personnel; Risk; Role; Sampling; Scientist; Social support; Socialization; Source; Structure; Surveys; Testing; Therapeutic immunosuppression; Time; Training; Transplant Recipients; Transplantation; Universities; Waiting Lists; Work; acceptability and feasibility; career; career development; clinical decision-making; community engaged research; design; disability; exhaust; experience; graft failure; health communication; health related quality of life; high risk; improved; mortality; organ transplant rejection; patient oriented; post-transplant; preference; professor; programs; provider communication; pulmonary function; randomized, clinical trials; recruit; theories; tool; transplant centers; willingness

Project Abstract/Summary As a health services researcher and Assistant Professor at Temple University, my long-term career goal is to become a leader in preference-based, patient-centered outcomes research to inform decision making for patients with end-stage lung disease, specifically about transplantation decisions. Clinical trials have shown that decision aids improve the quality and efficiency of decision making, improve comprehension and decrease decisional conflict. Despite these benefits, few decision aids have addressed the complexity of lung transplant. A critical barrier to the development of decision aids is the inability to inform and communicate to patients and caregivers the impact of transplant on quality of life (QoL). Thus, to address these knowledge gaps and pursue my long-term career goals, I will investigate patient priorities for QoL outcomes in the context of lung transplant decision making to inform the development of a decision aid. Three Specific Aims will accomplish this objective. AIM 1: Describe priorities for QoL outcomes and their impact on decision making among patients (n=30-40) and caregivers (n=30-40) at each phase of lung transplant, and clinicians (n=10-15). AIM 2: Measure QoL, priorities for outcomes, and willingness to trade between quantity and quality of life among a prospective cohort of patients (n=200) and caregivers (n=200) considering lung transplant using health-related quality of life measures, best- worst scaling tasks, and treatment tradeoff exercises. AIM 3: Develop and assess the feasibility and acceptability of a decision aid among patient and caregiver dyads (n=30) considering lung transplant. To accomplish these aims, I propose a mixed method approach. Qualitative methods include semi-structured interviews conducted in cross-sectional samples across transplant phases (Aim 1). Quantitative surveys and the feasibility/acceptability study will be collected among patients with end-stage lung disease just starting to consider transplant, as well as their caregivers (Aims 2 and 3). A prospective cohort will be followed over time to identify differences across phases of decision making (Aim 2). Although I have had a productive start to my career, I require further training to execute these Aims, accomplish these goals and achieve independence as an investigator. Specifically, I have identified four short-term career objectives. I will: 1) lead a community-engaged research effort inclusive of patients, caregivers and clinicians; 2) design and implement qualitative and mixed methods approaches to collect and analyze patient experience data; 3) obtain formal training in theory of decision making, interpersonal health communication and risk communication; and 4) acquire domain expertise to apply these skills in the context of lung transplant. I have designed a career development plan to achieve these objectives that includes mentorship from a highly accomplished group of researchers who are dedicated to my career development and experts in decision making theory, decision aid design, health and risk communication, qualitative and mixed methods, and lung transplant. These mentors have long histories of extramural funding and mentoring. In addition to mentored instruction, I will complete didactic coursework and intensive professional trainings.

项目摘要/摘要 作为坦普尔大学的卫生服务研究员和助理教授，我的长期职业目标是 成为基于偏好的，以患者为中心的结果研究的领导者，以告知决策 末期肺部疾病的患者，特别是关于移植决策的患者。临床试验表明 决策辅助提高决策的质量和效率，提高理解力并减少 决策冲突。尽管有这些好处，但很少有决策辅助工具解决了肺移植的复杂性。 决策艾滋病制定的关键障碍是无法向患者提供信息和沟通 护理人员移植对生活质量（QOL）的影响。因此，解决这些知识差距并追求 我的长期职业目标，我将在肺移植中调查QOL结果的患者优先事项 决策，以告知决策援助的发展。三个具体目标将实现这一目标。 目标1：描述质量结果的优先级及其对患者对决策的影响（n = 30-40）和 在肺移植的每个阶段和临床医生（n = 10-15）处的护理人员（n = 30-40）。目标2：测量QOL，优先级 为了结果，并愿意在预期的患者队列中进行数量和生活质量之间的贸易 （n = 200）和护理人员（n = 200）考虑使用与健康相关的生活质量度量，最好的肺移植 最差的缩放任务和治疗权衡练习。目标3：发展和评估可行性和可接受性 考虑肺移植的患者和护理人员二元组（n = 30）的决策辅助。完成这些 目的，我提出了一种混合方法。定性方法包括在 跨移植相的横截面样品（AIM 1）。定量调查和可行性/可接受性 研究将在刚开始考虑移植的终阶段肺病患者中收集研究， 作为他们的护理人员（目标2和3）。随着时间的推移，将遵循前瞻性队列，以确定各个方面的差异 决策阶段（目标2）。尽管我的职业生涯有效，但我需要进一步的培训 为了执行这些目标，实现这些目标并作为研究者实现独立性。具体来说，我 已经确定了四个短期职业目标。我将：1）领导社区参与的研究工作，包括 患者，看护者和临床医生； 2）设计和实施定性和混合方法来收集 并分析患者经验数据； 3）获得决策理论，人际健康的正式培训 沟通和风险交流； 4）获取领域专业知识以在 肺移植。我设计了一项职业发展计划，以实现包括指导的目标 来自一个专门致力于我的职业发展和专家专家的一群成就卓著的研究人员 决策理论，决策援助设计，健康和风险交流，定性和混合方法以及 肺移植。这些导师拥有较长的校外资金和指导历史。除了指导 指示，我将完成教学课程和强化专业培训。