Identifying caregivers for deprescribing pragmatic trials

摘要 拟议的补充项目建立在父拨款R24 AG064025的基础上，该拨款建立了美国。 非处方研究网络(Usden)。该网络旨在促进对停药的有效研究 -在安全的环境中停止不必要的、可能有害的或不符合目标的药物的结构化过程， 有效、以患者为中心的方式-并建立一个跨学科的调查人员社区 这块地。在该项目的第一年，朝着最初目标取得了实质性进展。 该网络通过初级调查人员密集培训和 其他机会，创建了一个协调的研究网站网络，开发和传播资源以 资助非处方研究，资助创新试点研究和授予规划奖，并参与 利益攸关方最大限度地发挥停药研究的相关性。 本补编的目标是扩大该网络的工作，将重点放在阿尔茨海默病和 相关痴呆症(ADRD)。具体地说，该项目将解决取消研究处方的一个高度优先领域 -开发一种工具，以务实的方式识别与之生活在一起的人的家庭和无偿照顾者 痴呆症(PLWD)用于停药试验。PLWD面临相当大的药物相关治疗负担， 伤害。照顾者经常负责用药管理，因用药相关而面临压力 任务，并有特定的信息和决策需求和冲突。照顾者有目的的参与 对于PLWD实施停药至关重要。然而，去处方知识库中的一个主要缺口是 很少有非处方干预措施具体确定或吸引ADRD照顾者。此外， 照顾者在提供护理时没有得到常规的识别或支持，卫生系统也很少收集关于 结果反映了他们的生活经历。系统地确定有责任的照顾者 管理药物将促进务实的试验招募，为停药量身定做 对照顾者的干预和收集照顾者报告的结果衡量标准。这样做的目的是 补充奖励包括：1)反复改进用于识别未来嵌入的PLWD照顾者的工具 通过以用户为中心的设计流程进行务实的非处方试验，包括对Key的深入访谈 利益相关者；以及2)在两个医疗保健系统(50个)中使用25个患者-照顾者对偶来测试所得到的工具 二元)，以确定概念的证明、可行性和过程的可接受性。有一件急事 公共卫生需要建设国家进行务实临床试验的能力，以改善 在“现实世界”的条件下，照顾可再生能源疾病及其照顾者，包括停药。促进 确定ADRD照顾者进行务实试验将是停药和治疗领域的一大进步 更广泛的ADRD研究。此外，在电子病历中识别照顾者将 通过使照顾者能够接受量身定制的培训和支持，加强对可持续发展妇女和照顾者的护理。

ABSTRACT The proposed supplemental project builds on the parent grant, R24 AG064025, which established the U.S. Deprescribing Research Network (USDeN). The Network aims to catalyze impactful research on deprescribing - the structured process of stopping unnecessary, potentially harmful, or goal-discordant medications in a safe, effective, and patient-centered manner – and build an interdisciplinary community of investigators working in this field. During the first year of the project, substantial progress has been made towards the original aims. The Network has supported mutual learning and collaboration through a Junior Investigators Intensive and other opportunities, created a coordinated network of research sites, developed and disseminated resources to aid deprescribing research, funded innovative pilot studies and grant planning awards, and engaged stakeholders to maximize the relevance of research on deprescribing. The goal of this supplement is to expand the work of the Network to focus on Alzheimer's Disease and Related Dementias (ADRD). Specifically, the project will address a high-priority area for deprescribing research – the development of a tool for pragmatically identifying family and unpaid caregivers of people living with dementia (PLWD) for deprescribing trials. PLWD face considerable medication-related treatment burden and harms. Caregivers are often responsible for medication management, face strain due to medication-related tasks and have specific informational and decisional needs and conflicts. Purposeful engagement of caregivers is critical for implementing deprescribing for PLWD. Yet, a major gap in the deprescribing knowledge base is that few deprescribing interventions have specifically identified or engaged ADRD caregivers. Moreover, caregivers are not routinely identified or supported in care delivery, and health systems rarely collect data on outcomes that reflect their lived experience. Systematically identifying caregivers with responsibility for managing medications would facilitate pragmatic trial recruitment, tailored delivery of deprescribing interventions to caregivers and collection of caregiver-reported outcome measures. The aims of this supplemental award are: 1) To iteratively refine a tool for identifying caregivers of PLWD for future embedded pragmatic deprescribing trials through a user-centered design process involving in-depth interviews with key stakeholders; and 2) To test the resultant tool with 25 patient-caregiver dyads at two healthcare systems (50 dyads in total) to establish proof of concept, feasibility and acceptability of the process. There is an urgent public health need to build the nation's capacity to conduct pragmatic clinical trials of strategies to improve the care of PLWD and their caregivers, including deprescribing, under “real-world” conditions. Facilitating identification of ADRD caregivers for pragmatic trials will be a major advance for the field of deprescribing and ADRD research more broadly. Moreover, identification of caregivers in the electronic medical record will enhance the care of PLWD and caregivers by enabling caregivers to receive tailored training and support.