Improving shared decision making in lung disease

改善肺部疾病的共同决策

• 批准号: 10468184
• 负责人: Joanna Lee Hart
• 金额: $ 71.24万
• 依托单位: UNIVERSITY OF PENNSYLVANIA
• 依托单位国家: 美国
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-08-15 至 2026-07-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10468184
• 关键词: Advance Care Planning; Ambulatory Care Facilities; American; Baptist Church; Behavioral; Benefits and Risks; Black race; Caregiver well-being; Caregivers; Caring; Case Study; Cause of Death; Characteristics; Chronic Obstructive Pulmonary Disease; Clinic Visits; Clinical; Cognitive; Cohort Studies; Communication; Communities; Decision Making; Decision Theory; Distress; Elderly; Emotional; Emotions; Family Caregiver; Foundations; Funding; Future; Geography; Goals; Health; Health system; Healthcare; Individual; Intervention; Investigation; Knowledge; Lead; Link; Lung; Lung diseases; Measurement; Measures; Mediating; Methodology; Methods; Modeling; Mood Disorders; National Heart, Lung, and Blood Institute; Outcome; Palliative Care; Participant; Patients; Pennsylvania; Personal Satisfaction; Predisposition; Prospective cohort study; Quality of life; Race; Reporting; Research Infrastructure; Risk; Role; Rural; Symptoms; Testing; Thinking; Time; United States National Institutes of Health; Universities; Update; Work; base; burden of illness; care delivery; clinical care; cohort; coping; emotional symptom; expectation; experience; forest; health management; health related quality of life; improved; individual patient; informal caregiver; innovation; insight; novel; optimism; patient expectation; patient population; patient subsets; patient-clinician communication; physical symptom; preference; prevent; psychologic; recruit; shared decision making; sociodemographics; socioeconomics; success; therapy development; treatment risk

PROJECT SUMMARY Patients’ health expectations lie at the foundation of their preference-sensitive choices, such as whether to pursue comfort-oriented therapies as a primary or concurrent strategy. To achieve high-quality shared decision making, patients with serious illnesses must form accurate expectations for their future health. However, many patients have inaccurate expectations, limiting their ability to make decisions concordant with their values. Chronic obstructive pulmonary disease (COPD) is an incurable lung disease of older adults and a leading cause of death worldwide. Patients with COPD and their caregivers frequently experience a high burden of symptoms, mood disorders, and difficulty coping, yet underuse advance care planning and palliative treatments. Existing evidence reveals that patients with COPD are at risk for expectation inaccuracies and our preliminary work reveals that overly optimistic expectations are associated with worse quality of life over time. Our overarching objective is to promote the well-being of patients living with COPD through the delivery of care concordant with individual patients’ values. This work proposes a novel application of behavioral theories of decision making and innovative methodologies to the common problem of goal-discordant care. This is a prospective cohort study among 420 patients with severe COPD plus their family caregivers recruited from Wake Forest Baptist Health, Geisinger Health System, and the University of Pennsylvania Health System. These three health systems represent diverse communities, including rural and Black communities where COPD is disproportionately burdensome, and have robust research infrastructures. The specific aims of this study are to: 1) identify patient and caregiver characteristics associated with inaccurate health expectations, 2) quantify associations between patients’ and caregivers’ expectation accuracy and well-being, and 3) identify mechanisms through which clinician communication influences expectation accuracy. The study team has the requisite content expertise, methodological expertise, and prior success conducting investigations of this type. Completion of this project will provide mechanistic insights into ways to promote optimal shared decision making in serious illness using state-of-the-art methods to test a novel conceptual model. This work will result in key targets for intervention development to improve expectation management and decision making among patients with serious illness.

项目摘要 患者的健康期望是他们偏好敏感选择的基础，例如是否 将舒适导向疗法作为主要或并发策略。实现高质量的共享决策 因此，患有严重疾病的患者必须对自己未来的健康状况形成准确的预期。但不少 患者的期望不准确，限制了他们做出与其价值观一致的决定的能力。 慢性阻塞性肺疾病（COPD）是老年人的一种无法治愈的肺部疾病， 全球范围内的死因。COPD患者及其护理人员经常经历高负担， 症状，情绪障碍和难以应对，但未充分利用先进的护理计划和姑息治疗 治疗。现有的证据表明，COPD患者存在预期不准确的风险， 初步研究表明，随着时间的推移，过于乐观的期望与生活质量下降有关。 我们的首要目标是通过提供护理来促进COPD患者的健康 与患者个体值一致。这项工作提出了一种新的应用行为理论， 决策和创新的方法，以目标不一致的护理的共同问题。这是一 在420例重度COPD患者及其家庭照顾者中进行的前瞻性队列研究， 维克森林浸信会健康，盖辛格健康系统和宾夕法尼亚大学健康系统。 这三个卫生系统代表了不同的社区，包括农村和黑人社区， COPD是不成比例的负担，并有强大的研究基础设施。具体目标是 研究是：1）确定与不准确的健康期望相关的患者和护理人员特征，2） 量化患者和护理人员的期望准确性和幸福感之间的关联，以及3）识别 临床医生沟通影响预期准确性的机制。 研究团队拥有必要的内容专业知识、方法专业知识和先前成功开展的 这种类型的调查。该项目的完成将提供有关如何促进 在严重疾病中使用最先进的方法来测试一个新的概念， 模型这项工作将导致制定干预措施的关键目标，以改善期望管理 和重大疾病患者的决策。