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 作为坦普尔大学的健康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，以患者为中心的结果研究的领导者，为决策提供信息， 终末期肺病患者，特别是关于移植决定。临床试验表明 决策辅助工具提高了决策的质量和效率，提高了理解力， 决策冲突。尽管有这些好处，但很少有决策辅助工具能够解决肺移植的复杂性。 发展决策辅助工具的一个关键障碍是无法向患者提供信息和进行沟通， 照顾者移植对生活质量（QoL）的影响。因此，为了解决这些知识差距， 我的长期职业目标，我将调查肺移植背景下患者生活质量结局的优先级 决策制定为决策辅助工具的开发提供信息。三个具体目标将实现这一目标。 目的1：描述QoL结局的优先级及其对患者决策的影响（n=30-40）， 肺移植各阶段护理人员（n=30-40）和临床医生（n=10-15）。目标2：测量QoL、优先事项 结果，以及在前瞻性患者队列中在生活数量和质量之间进行交易的意愿 （n=200）和护理人员（n=200）考虑肺移植，使用健康相关的生活质量指标，最佳- 最差缩放任务和治疗权衡练习。目标3：制定和评估可行性和可接受性 在考虑肺移植的患者和护理者二人组（n=30）中的决策辅助。完成这些 因此，我提出了一种混合方法。定性方法包括半结构化访谈， 跨移植阶段的横断面样本（目标1）。定量调查和可行性/可接受性 这项研究也将收集那些刚开始考虑移植的终末期肺病患者的资料 作为他们的照顾者（目标2和3）。前瞻性队列将随时间推移进行随访，以确定 决策阶段（目标2）。虽然我的职业生涯有了一个富有成效的开端，但我需要进一步的培训 执行这些宗旨，实现这些目标，并实现作为调查员的独立性。我特别 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，护理人员和临床医生; 2）设计和实施定性和混合方法，以收集 并分析患者的经验数据; 3）获得决策理论，人际健康， 沟通和风险沟通;以及4）获得领域专业知识，在以下情况下应用这些技能： 肺移植我已经设计了一个职业发展计划，以实现这些目标，其中包括指导 来自一个非常有成就的研究小组，他们致力于我的职业发展， 决策理论，决策辅助设计，健康和风险沟通，定性和混合方法，以及 肺移植这些导师有着悠久的校外资助和指导历史。除了指导 我将完成教学课程和密集的专业培训。