Identifying caregivers for deprescribing pragmatic trials

摘要 拟议的补充项目建立在母基金R24 AG 064025的基础上，该基金建立了美国 撤销处方研究网络（USDeN）。该网络旨在促进关于取消处方的有影响力的研究 - 停止不必要的，潜在有害的，或目标不一致的药物在一个安全的， 有效的，以患者为中心的方式-并建立一个跨学科的研究人员社区， 该领域在项目的第一年，在实现最初目标方面取得了重大进展。 该网络通过初级调查员强化培训和 其他机会，建立了一个协调的研究网站网络，开发和传播资源， 援助取消处方的研究，资助创新试点研究和赠款规划奖，并参与 利益相关者最大限度地提高关于取消处方的研究的相关性。 这一补充的目标是扩大该网络的工作，重点关注阿尔茨海默病， 相关性痴呆（ADRD）。具体而言，该项目将解决取消处方研究的一个高度优先领域 - 开发一种工具，以务实的方式确定患有艾滋病毒/艾滋病者的家庭和无报酬照顾者， 痴呆症（PLWD）用于取消处方试验。PLWD面临相当大的药物相关治疗负担， 伤害照顾者往往负责药物管理，面临因药物相关的紧张 任务，并有具体的信息和决策需求和冲突。照顾者有目的的参与 是实施对PLWD取消处方的关键。然而，取消处方知识库中的一个主要空白是 很少有取消处方的干预措施专门确定或参与ADRD护理人员。此外，委员会认为， 在提供护理时，护理人员没有得到常规的识别或支持，卫生系统很少收集以下方面的数据： 这些结果反映了他们的生活经历。系统地确定照顾者的责任 管理药物将促进务实的试验招募， 对照顾者的干预和收集照顾者报告的结果措施。这样做的目的是 补充奖励是：1）反复完善用于识别PLWD照顾者的工具， 通过以用户为中心的设计过程，包括与关键人物的深入访谈， 利益相关者;和2）在两个医疗保健系统（50）中使用25个患者-护理人员配对来测试所得到的工具 共2对），以建立工艺的概念、可行性和可接受性的证明。目前迫切 公共卫生需要建立国家的能力，进行务实的临床试验的战略，以改善 在“真实世界”条件下，对PLWD及其护理人员的护理，包括取消处方。促进 确定ADRD照顾者的实用性试验将是一个重大的进步，为领域的处方， 更广泛的ADRD研究。此外，在电子医疗记录中识别护理者将 通过使护理人员能够接受量身定制的培训和支持，加强对艾滋病患者和护理人员的护理。

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.