Improving shared decision making in lung disease

项目概要 患者的健康期望是他们做出偏好敏感选择的基础，例如是否 追求以舒适为导向的治疗作为主要或并行策略。实现高质量的共同决策 因此，重病患者必须对自己未来的健康形成准确的预期。然而，许多 患者的期望不准确，限制了他们做出符合其价值观的决策的能力。 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，也是主要的肺部疾病 全世界的死亡原因。慢性阻塞性肺病患者及其护理人员经常承受沉重的负担 症状、情绪障碍和应对困难，但未充分利用预先护理计划和姑息治疗 治疗。现有证据表明，慢性阻塞性肺病患者存在预期不准确的风险，我们的研究 初步研究表明，随着时间的推移，过度乐观的期望与生活质量的恶化有关。 我们的首要目标是通过提供护理来促进慢性阻塞性肺病患者的福祉 符合患者个体的价值观。这项工作提出了行为理论的新颖应用 针对目标不一致护理的常见问题的决策和创新方法。这是一个 前瞻性队列研究，参与者为 420 名严重慢性阻塞性肺病患者及其家庭护理人员，招募对象为 维克森林浸信会健康中心、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不同的社区，包括农村和黑人社区，其中 慢性阻塞性肺病（COPD）的负担过重，并且拥有强大的研究基础设施。本次活动的具体目标 研究目的是：1) 识别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) 确定 临床医生沟通影响期望准确性的机制。 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研究 此类调查。该项目的完成将为促进 使用最先进的方法来测试新的概念，从而在严重疾病中做出最佳的共同决策 模型。这项工作将产生干预措施发展的关键目标，以改善期望管理 以及重症患者的决策。

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.