Identifying caregivers for deprescribing pragmatic trials

摘要 拟议的补充项目建立在母基金 R24 AG064025 的基础上，该基金建立了美国 取消处方研究网络 (USDeN)。该网络旨在促进有关取消处方的有影响力的研究 - 以安全、有效的方式停止不必要的、潜在有害的或与目标不一致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研究人员社区 这个领域。在该项目的第一年里，在实现最初目标方面取得了实质性进展。 该网络通过初级调查员强化和 其他机会，创建了一个协调的研究地点网络，开发和传播资源 援助取消处方研究，资助创新试点研究和赠款规划奖项，并参与 利益相关者最大限度地发挥取消处方研究的相关性。 本增刊的目标是扩大网络的工作范围，重点关注阿尔茨海默病和 相关痴呆症（ADRD）。具体来说，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，用于实用地识别患有此类疾病的人的家庭和无偿护理人员 痴呆症（PLWD）的停用试验。 PLWD 面临相当大的药物相关治疗负担 危害。护理人员通常负责药物管理，面临因药物相关而造成的压力 任务并具有特定的信息和决策需求和冲突。护理人员有目的地参与 对于实施 PLWD 取消处方至关重要。然而，处方知识库中的一个主要缺口是 很少有去处方干预措施专门识别或吸引 ADRD 护理人员。而且， 护理人员在提供护理服务时并未得到常规识别或支持，卫生系统也很少收集有关护理人员的数据 反映他们生活经历的结果。系统地识别负责的护理人员 管理药物将有助于务实的试验招募、定制化的处方交付 对护理人员进行干预并收集护理人员报告的结果指标。本次活动的目的 补充奖励包括： 1) 迭代完善用于识别 PLWD 护理人员的工具，以便将来嵌入 通过以用户为中心的设计过程进行务实的去处方试验，其中包括对关键人物的深入访谈 利益相关者； 2) 在两个医疗保健系统（50 总共二元）来建立流程的概念、可行性和可接受性证明。有紧急情况 公共卫生需要建设国家的能力，以开展务实的临床试验策略，以改善 在“现实世界”条件下对 PLWD 及其护理人员进行护理，包括取消处方。促进 确定 ADRD 护理人员进行实用试验将是取消处方和治疗领域的重大进步 ADRD 研究更广泛。此外，电子病历中护理人员的身份识别将 通过使护理人员能够接受量身定制的培训和支持，加强对 PLWD 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.