Understanding and Improving Surgical Decision-Making for Persons Living with Dementia, their Family Caregivers, and their Providers: A Mixed Methods Study

了解和改善痴呆症患者、其家庭护理人员及其提供者的手术决策：一项混合方法研究

• 批准号: 10617273
• 负责人: Joel S. Weissman
• 金额: $ 86.01万
• 依托单位: BRIGHAM AND WOMEN'S HOSPITAL
• 依托单位国家: 美国
• 财政年份: 2020
• 资助国家: 美国
• 起止时间: 2020-05-01 至 2025-04-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10617273
• 关键词: Address; Advance Care Planning; Advance Directives; Affect; Alzheimer' s Disease; Alzheimer' s disease related dementia; Area; Blood Vessels; Caregivers; Caring; Case Mixes; Case Study; Clinical; Communication; Communities; Consensus; Data; Databases; Decision Making; Dementia; Development; Elderly; Epidemiology; Face; Family; Family Caregiver; Friends; Future; Goals; Guidelines; Health; Health system; Home; Intervention; Life; Link; Medical; Medicare; Medicare claim; Methods; Nursing Homes; Operative Surgical Procedures; Outcome; Palliative Care; Patient Care; Patient Preferences; Patient-Centered Care; Patient-Focused Outcomes; Patients; Persons; Policies; Postoperative Period; Procedures; Process; Provider; Quality of life; Recommendation; Recovery; Research; Research Priority; Risk; Risk Factors; Sampling; Surgeon; Surgical Management; Symptoms; System; Testing; Training; Uncertainty; United States National Institutes of Health; Vulnerable Populations; Work; comparative; cost; design; evidence base; evidence based guidelines; expectation; health care service utilization; improved; inpatient surgery; novel; nursing home length of stay; pain perception; practice setting; reduce symptoms; shared decision making; surgery outcome; surgical risk; tool

Project Summary/Abstract (30 lines max) Surgery often has benefits, such as reducing symptoms or extending life, but it is not without risk. Patients vary both in their tolerance of symptoms and of surgical risk. The concept of shared, patient preference-concordant surgical decision making potentially helps patients achieve their goals. Surgical decision-making for persons living with dementia (PLWD) is challenging for numerous reasons, including limited longitudinal data on outcomes, an inability of the patient to fully participate in the discussion, and vague advance directives with multiple caregivers(surrogates). In the absence of evidence-based guidelines, clinicians struggle with recommendations and patients and caregivers face uncertainty about the consequences of surgery. Research on dementia and surgery is limited. However, our pilot work has found that among common vascular procedures, PLWD had poorer surgical outcomes compared with persons w/o dementia. In other pilot work exploring the use of Advance Care Planning among PLWD facing surgery, we are finding that surgeons do not routinely consider dementia as an independent risk factor. A stronger evidence base has the potential to facilitate surgical decision-making. The proposed mixed methods study is designed to understand the epidemiology of surgery for PLWD, as well as patient, caregiver, and provider practices and challenges of surgical decision- making in clinical settings. We focus on surgery because it is common among elderly PLWD, it often represents a critical inflection point in quality of life, and therefore is a fraught process for all involved. The goal of the study is to improve decision-making and enhance recovery when surgery is chosen. Aim 1) Develop the evidence base to understand the case mix and comparative outcomes of surgery provided to PLWDs. We will use large databases to describe the epidemiology of inpatient surgery for PLWD from several perspectives intended to inform expectations and decision-making. Case identification of dementia will take advantage of state-of-the-art methods from an ongoing R01. Aim 2) Characterize surgical decision-making for PLWD in practice settings, as perceived by PLWD and their family caregivers, and providers/clinicians. Using case studies of a multi- regional selection of 12 health systems, we will explore in-depth: 1) Approaches to surgical decision- making for PLWDs; 2) Priorities and unmet needs of patients, families, and surgeons around surgical decision-making; 3) Facilitators and barriers to making patient preference-concordant care decisions. Aim 3) Develop recommendations around surgical decision-making processes. We will conduct a modified Delphi panel with national experts and stakeholders to develop recommendations about surgical and non-surgical options that mitigate the unique vulnerabilities of PLWD.

项目摘要/摘要（最多30行） 手术通常会带来好处，例如减少症状或延长寿命，但并非没有风险。 患者的症状耐受性和手术风险都不同。共享，耐心的概念 偏爱结合的手术决策可能有助于患者实现目标。 对于患有痴呆症患者（PLWD）的人的手术决策，对于许多人来说都是挑战 原因，包括有限的结果纵向数据，患者无法完全参与 在讨论中，以及与多个护理人员（代理）的模糊预付指令。在缺席的情况下 在循证指南中，临床医生与建议以及患者和护理人员斗争 面对手术后果的不确定性。 痴呆和手术的研究有限。但是，我们的飞行员工作发现 与N/O的人相比 失智。在其他飞行员工作中，探讨了PLWD面对的预先护理计划的使用 手术，我们发现外科医生通常不会将痴呆视为独立风险 因素。更强的证据基础有可能促进手术决策。 拟议的混合方法研究旨在了解手术的流行病学 PLWD以及患者，照顾者和提供者的实践以及外科决策的挑战 - 在临床环境中进行。我们专注于手术，因为它在老年人PLWD中很常见，通常 代表了生活质量的关键拐点，因此对于所有参与者来说都是一个充满活力的过程。 该研究的目的是在选择手术时改善决策并增强恢复。 目的1）建立证据基础以了解案例混合和比较结果 提供给PLWD的手术。我们将使用大型数据库来描述住院的流行病学 从几个角度来看，PLWD的手术旨在告知期望和决策。 痴呆症的病例识别将利用正在进行的R01的最新方法。 目标2）在练习环境中为PLWD进行手术决策表征， PLWD及其家庭护理人员以及提供者/临床医生。使用多个案例研究 区域选择12个卫生系统，我们将深入探讨：1）手术决策方法 - 制作PLWD； 2）手术周围患者，家庭和外科医生的优先事项和未满足的需求 决策; 3）做出患者偏好符合护理决策的促进者和障碍。 目标3）围绕手术决策过程提出建议。我们将 与国家专家和利益相关者一起进行改进的Delphi小组来开发建议 关于减轻PLWD独特漏洞的外科手术和非手术选择。