Uncertainty Among Patients Undergoing Lung Transplant Evaluation

摘要 作为一名在科罗拉多大学（UC）完成肺部奖学金的姑息治疗专业医生，我 理想的定位，进行研究，重点是改善慢性肺部疾病患者的生活质量 （CLD）。我已经在临床研究生产，出版5摘要，2第一作者和8合作- 在进行临床培训的同时撰写论文。这台NIH F32 Ruth L. Kirschstein国家研究服务 奖项（PA-21-048）的提交将使我朝着改善生活质量的长期目标前进 为CLD患者设计干预措施，以解决疾病的不确定性。本提案的目的 是表征接受肺移植的患者之间的疾病不确定性和疾病沟通， 移植评估采用定量和定性方法。我召集了一个优秀的 导师团队和UC的研究环境是完成这个项目的理想选择。我已经得到 来自UC肺部科学和重症监护医学部的资金用于执行数据 收藏此提案CLD患者的症状负担高，生活质量差， 有限和不确定的预后。患者对不确定性的感知（“疾病不确定性”）发生在患者 无法理解他们不断变化的症状，功能状态下降， 临床医生疾病不确定性与各种慢性疾病中的生活质量下降、抑郁和焦虑有关。 包括CLD在内的疾病。对于重度CLD患者，肺移植可改善生活质量和生存率。 然而，肺移植评估是一个痛苦和不确定的时期。表征疾病不确定性 在接受肺移植的患者中，评估是确定因素的重要步骤， 与不确定性有关的问题，并设计旨在减少不确定性和提高 生活患者报告说，更好的临床医生对疾病进展的沟通可能会减少疾病 不确定性如何最好地传达患者认为重要的关于他们的疾病将如何进展的信息， 影响他们的生活（“疾病沟通”）尚未在CLD或接受肺移植的患者中进行研究。 移植评估根据我们的初步数据，我们预计患者将需要有关主题的信息， 超过估计的剩余时间，例如症状的进展。本研究将：（1） 通过对患者的调查，描述患者认为重要的不确定性和疾病沟通 接受肺移植评估，2）了解患者如何感知疾病的不确定性和疾病 使用半结构化的患者访谈，使用内容分析框架进行分析。的 从该提案中获得的数据将为解决疾病不确定性的干预措施的发展提供信息 改善与CLD患者的疾病沟通，这将是我K23申请的重点。

ABSTRACT As a palliative-care trained physician completing pulmonary fellowship at the University of Colorado (UC), I am ideally positioned to conduct research focused on improving quality of life for patients with chronic lung disease (CLD). I have already been productive in clinical research, publishing 5 abstracts, 2 first author and 8 co- authored papers while pursuing clinical training. This NIH F32 Ruth L. Kirschstein National Research Service Award (PA-21-048) submission will allow me to progress toward my long-term goal to improve quality of life for patients with CLD by designing interventions to address illness uncertainty. The objective of this proposal is to characterize illness uncertainty and illness communication among patients undergoing lung transplant evaluation using quantitative and qualitative methodologies. I have assembled an excellent mentorship team and the research environment at UC is ideal to complete this project. I have already obtained funding from the Division of Pulmonary Sciences and Critical Care Medicine at UC to perform the data collection for this proposal. Patients with CLD suffer from a high symptom burden, poor quality of life, and a limited and uncertain prognosis. Patient perception of uncertainty (“illness uncertainty”) occurs when patients are unable to make sense of their changing symptoms, declining functional status, and communication from clinicians. Illness uncertainty is related to worse quality of life, depression, and anxiety in a variety of chronic illnesses, including CLD. For patients with severe CLD, lung transplant improves quality of life and survival. However, lung transplant evaluation is a time of distress and uncertainty. Characterizing illness uncertainty among patients who are undergoing lung transplant evaluation is an important step in identifying factors associated with uncertainty, and designing interventions aimed at reducing uncertainty and improving quality of life. Patients report that better clinician communication about disease progression may decrease illness uncertainty. How to best communicate what patients find important about how their disease will progress and impact their lives (“illness communication”) has not been studied in CLD or among patients undergoing lung transplant evaluation. Based on our preliminary data, we expect that patients will want information about topics beyond an estimate of time remaining, such as progression of symptoms. The proposed study will 1) characterize uncertainty and the illness communication patients find important using a survey of patients undergoing lung transplant evaluation, and 2) understand how patients perceive illness uncertainty and illness communication using semi-structured patient interviews, analyzed using a content analysis framework. The data obtained from this proposal will inform the development of an intervention addressing illness uncertainty and improving illness communication with patients with CLD, which will be the focus of my K23 application.