Identifying caregivers for deprescribing pragmatic trials
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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.
