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培训医生，我 非常适合进行致力于改善慢性肺病患者生活质量的研究 (CLD)。我在临床研究方面已经很有成效，发表了5篇摘要，2篇第一作者和8篇合著者。 在从事临床培训的同时撰写论文。NIH F32 Ruth L.Kirschstein国家研究服务局 提交奖项(PA-21-048)将使我朝着改善生活质量的长期目标前进 通过设计解决疾病不确定性的干预措施，为慢性阻塞性肺疾病患者提供更多信息。这项提议的目的是 是描述接受肺部手术的患者的疾病不确定性和疾病沟通 移植评估采用定量和定性相结合的方法。我已经组建了一支出色的 加州大学的导师团队和研究环境是完成这个项目的理想选择。我已经得到了 来自加州大学肺科学和重症监护医学部的资金用于执行数据 此提案的集合。慢性阻塞性肺病患者的症状负担高，生活质量差， 预后有限且不确定。患者对不确定性的感知(“疾病不确定性”)发生在患者 无法理解他们症状的变化、功能状态的下降以及与 临床医生。在各种慢性疾病中，疾病不确定性与生活质量下降、抑郁和焦虑有关 疾病，包括慢性阻塞性肺病。对于患有严重慢性阻塞性肺疾病的患者，肺移植可以改善生活质量和生存。 然而，肺移植评估是一个充满痛苦和不确定性的时期。疾病不确定性的特征 在接受肺移植的患者中，评估是确定因素的重要一步。 与不确定性相关，并设计旨在减少不确定性和提高质量的干预措施 生活。患者报告说，更好地与临床医生沟通疾病进展可能会减少疾病 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和 对他们生活的影响(“疾病沟通”)尚未在慢性阻塞性肺病或接受肺部手术的患者中进行研究。 移植评估。根据我们的初步数据，我们预计患者会想要关于主题的信息 超出对剩余时间的估计，例如症状的进展。拟议的研究将1) 使用对患者的调查来表征不确定性和患者认为重要的疾病沟通 接受肺移植评估，以及2)了解患者如何感知疾病不确定性和疾病 沟通采用半结构化的患者访谈，使用内容分析框架进行分析。这个 从这项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 以及改善与CLD患者的疾病沟通，这将是我K23应用程序的重点。

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.