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

项目摘要/摘要(最多30行) 手术通常有好处，比如减轻症状或延长生命，但也不是没有风险。 患者对症状和手术风险的耐受性各不相同。共享、耐心的概念 符合偏好的手术决策潜在地帮助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，包括结果的纵向数据有限，患者无法完全参与 在讨论中，与多名照顾者(代孕者)进行了含糊的提前指示。在缺席时 在循证指南的基础上，临床医生努力争取建议，患者和照顾者 面对手术后果的不确定性。 关于痴呆症和外科手术的研究有限。然而，我们的试点工作发现，在 在普通的血管手术中，PLWD患者的手术结果比无WD患者差。 痴呆症。在其他试点工作中，探索在面临PLWD的患者中使用预先护理计划 手术，我们发现外科医生通常并不认为痴呆症是一种独立的风险 因素。更强大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、护理者和提供者的实践和手术决策的挑战- 在临床环境中制造。我们专注于手术，因为这在老年PLWD中很常见，它经常 代表着生活质量的一个关键转折点，因此对所有参与者来说都是一个令人担忧的过程。 这项研究的目标是在选择手术时改善决策和提高恢复。 目的1)建立证据基础，以了解以下情况的病例组合和比较结果 提供给PLWD的手术。我们将使用大型数据库来描述住院患者的流行病学 从几个角度对PLWD进行手术治疗，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R01的最先进的方法。 目的2)描述在实践环境中对PLWD的手术决策的特征 由PLWD及其家庭照顾者和提供者/临床医生提供。使用案例研究多个- 12个医疗系统的区域选择，我们将深入探讨：1)手术决策的方法- 为PLWD做准备；2)患者、家属和外科医生在手术前后的优先事项和未得到满足的需求 决策；3)做出患者偏好一致性护理决策的促进者和障碍。 目的3)围绕手术决策过程提出建议。我们会 与国家专家和利益相关者一起进行修改后的德尔福小组，以制定建议 关于手术和非手术选择，以减轻PLWD的独特脆弱性。

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.