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） 手术通常有好处，如减轻症状或延长生命，但并非没有风险。 患者对症状和手术风险的耐受性各不相同。分享的概念，耐心 偏好一致的手术决策可能有助于患者实现他们的目标。 痴呆症患者（PLWD）的手术决策对许多人来说是具有挑战性的。 原因，包括关于结局的纵向数据有限，患者无法充分参与 在讨论中，和模糊的预先指示与多个照顾者（代理人）。在没有 基于证据的指南，临床医生努力与建议和病人和照顾者 面临手术后果的不确定性。 关于痴呆症和手术的研究有限。然而，我们的试点工作发现， 与普通血管手术相比，PLWD的手术结局较差， 痴呆在其他试点工作中， 我们发现，外科医生通常不认为痴呆症是一个独立的风险， 因子更强有力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外科手术的流行病学， PLWD，以及患者、护理者和提供者的手术决策实践和挑战- 在临床环境中。我们专注于手术，因为它在老年PLWD中很常见， 代表了生活质量的一个关键转折点，因此对所有相关人员来说都是一个充满挑战的过程。 这项研究的目的是改善决策和提高恢复时，选择手术。 目的1）建立证据基础，以了解以下病例的病例组合和比较结果： 为艾滋病毒携带者提供手术。我们将使用大型数据库来描述住院患者的流行病学 从几个角度对PLWD的手术进行了研究，旨在为预期和决策提供信息。 痴呆症的病例识别将利用正在进行的R 01的最先进方法。 目的2）描述在实践环境中PLWD的手术决策，如所感知的 由PLWD及其家庭护理人员和提供者/临床医生提供。使用多个案例研究- 12个卫生系统的区域选择，我们将深入探讨：1）手术决策的方法- 2）患者、家属和外科医生在手术前后的优先事项和未满足的需求 决策; 3）促进者和障碍，使病人的偏好一致的护理决策。 目标3）围绕手术决策过程制定建议。我们将 与国家专家和利益攸关方举行经修改的德尔菲小组会议，以制定建议 关于减轻PLWD独特脆弱性的手术和非手术选择。