Preparation for lung transplant discussions and decisions among people with cystic fibrosis

项目摘要 囊性纤维化（CF）是一种进行性、致命的遗传性疾病（2020年死亡时的中位年龄为34岁）。肺 移植（LTx）是终末期CF的治疗，并且赋予患有CF的成人10年中位生存期。在 美国，在1秒用力呼气量（FEV 1）小于预测值30%的CF患者中， 每年死亡的患者多于接受LTx的患者。超过一半的CF患者在没有LTx的情况下死亡， 以供考虑。具有较低社会经济地位（SES）或非白人种族的CF患者减少了 转诊为LTx并恶化生存率。西班牙裔CF患者死亡风险增加近3倍 与非西班牙裔相比，患者偏好可能占推迟决定的25-40% 转诊，但选择有时可能会被告知有关LTx的不准确假设。低CF患者 FEV 1有较高的焦虑和抑郁发生率，这可能有助于避免LTx对话。 增加对LTx的理解，促进审议过程，可以减少 没有LTx的CF患者死亡。 我们与CF患者，护理人员和医生合作开发了Take on Transplant（ToT）：一个网络， 面向患者的LTx教育资源。ToT分享CF患者的个人叙述， 护理人员和最新的，CF特定的，基于指南的关于LTx的医疗信息。整体研究 目的是在一项多中心随机临床试验中， 试验采用混合方法评估FEV 1的CF患者对LTx讨论的准备情况 <50%的预测值（从关注的社区过度采样-低SES，西班牙裔或非白人种族）， 探讨ToT对患者心理社会功能的影响，并评估患者和医生的 对LTx教育的看法和使用。我们的研究将检查病人与医生的互动，并探索 可能决定医生是否/何时与关注社区的CF患者讨论LTx的因素（例如， 感知的LTx资格，内隐偏见，心理社会因素的评估）和ToT对 患者对LTx讨论的准备情况。 根据国家护理研究所（NINR）的优先事项，我们的研究重点是改善 对SES较低、非白人或西班牙裔患者不利并导致健康 差距。我们的目标是让患者能够讨论LTx。拟议的R 01将测试ToT对 准备LTx讨论，将从关注的社区过度抽样患者，并将评估 患者-医生动态，包括隐性偏见和歧视，这可能会限制在这种情况下获得LTx 弱势群体。

Project Summary Cystic fibrosis (CF) is a progressive, fatal genetic condition (median age at death was 34 years in 2020). Lung transplant (LTx) is a treatment for end-stage CF and confers 10 years median survival for adults with CF. In the U.S., among CF patients with forced expiratory volume in 1 second (FEV1) less than 30% of predicted, more patients die each year than undergo LTx. More than half of CF patients who die without LTx are never referred for consideration. CF patients with lower socioeconomic status (SES) or non-White race have decreased referral for LTx and worsened survival. Hispanic CF patients have a nearly 3-fold increased risk of death without LTx compared to non-Hispanics. Patient preference may account for 25-40% of decisions to defer referral, but choices may at times be informed by inaccurate assumptions regarding LTx. CF patients with low FEV1 have high rates of anxiety and depression, which may contribute to avoidance of LTx conversations. Increasing LTx comprehension, and promoting the process of deliberation, could reduce the number of people with CF who die without LTx. We collaborated with CF patients, caregivers, and physicians to develop Take on Transplant (ToT): a web- based, patient-facing resource for LTx education. ToT shares personal narratives of CF patients and caregivers and up-to-date, CF-specific, guideline-based medical information about LTx. The overall research objectives are to test the efficacy of ToT compared to an attention control in a multicenter randomized clinical trial incorporating mixed methods to assess preparedness for LTx discussions among CF patients with FEV1 <50% predicted (oversampling from communities of concern – low SES, Hispanic ethnicity, or non-White race), explore the impact of ToT on patients’ psychosocial functioning, and assess patients’ and physicians’ perceptions and use of LTx education. Our research will examine patient-physician interactions and explore factors that may determine if/when physicians discuss LTx with CF patients in communities of concern (e.g. perceived eligibility for LTx, implicit bias, assessment of psychosocial factors) and the impact of ToT on patients’ readiness for LTx discussions. In line with National Institute of Nursing Research (NINR) priorities, our research focuses on improving a process that disadvantages patients with lower SES, non-White race, or Hispanic ethnicity and leads to health disparities. We aim to empower patients to discuss LTx. The proposed R01 will test the impact of ToT on preparedness for LTx discussions, will oversample patients from communities of concern, and will evaluate patient-physician dynamics, including implicit bias and discrimination, which may limit access to LTx in this disadvantaged population.