Individuals living with Alzheimer's Disease and Related dementias (ADRD) may experience unwanted, intensive or burdensome end-of-life care because their preferences for care are unknown to their medical decision makers. For example, nearly 41% of individuals with ADRD undergo at least one intensive intervention (e.g., mechanical ventilation, artificial nutrition) in the last 3 months of life, which may prolong life but does not address quality of life. Thus, timely discussions about advance care planning (ACP) are imperative before individuals with dementia lose decision making capacity. Persons with cognitive impairment, spanning from mild cognitive impairment to dementia, are often cared for in primary care. However, primary care settings do not have effective models that can systematically integrate clinician-patient discussions and decision-making about ACP for older adults with and without cognitive impairment who still have decision making capacity. To address these gaps, we designed, refined with stakeholder input, and demonstrated the feasibility, acceptability, and efficacy of a theory-based and practical ACP group visit intervention, ENACT Group Visits (Engaging in Advance Care Planning Talks) among older primary care patients. ENACT Group Visits are two facilitated discussions, one month apart, led by a physician or advanced practice provider and a social worker. The intervention uses evidence-based ACP materials and leverages the group dynamic to promote patient goal-setting and self-efficacy. In a single-clinic pilot study, patients randomized to the ENACT Group Visits intervention had a 26% higher rate of ACP documents at 6 months, compared to a control arm of mailed ACP materials (p=0.007). This study aims to test the effectiveness of ENACT Group Visits to increase ACP documentation (one aspect of ACP) and to evaluate its effectiveness among patients across a spectrum of cognitive impairment, including early dementia. The proposed 2-arm, patient-level randomized trial will be conducted in five primary care clinics and is powered to compare ENACT Group Visits intervention vs control mailed ACP materials. We will use 1:1 allotment and patient-level block randomization by presence or absence of CI. The study will use components of PREPARE?, an evidence-based ACP program designed to decrease cognitive burden, and an easy-to-read advance directive.
Aim 1 will determine the effectiveness of ENACT Group Visits vs control at 6 months to increase ACP documentation (primary outcome), ACP readiness, decision self-efficacy, and quality of communication (secondary outcomes).
Aim 2 will determine whether the effectiveness of ENACT Group Visits intervention varies by cognitive impairment, including ADRD.
Aim 3 will describe acceptability and feasibility, as well as intervention fidelity and implementation outcomes, of ENACT Group Visits intervention using qualitative and mixed methods. This primary care-based effectiveness trial of ENACT Group Visits intervention among older adults, including those with dementia, will generate needed evidence for implementing effective ACP interventions into real-world primary care settings.

Public Health Relevance

The ENgaging in Advance Care planning Talks (ENACT) Group Visits intervention is a theory-based and practical primary care model that uses the strengths of group visits to promote advance care planning discussions and documentation. This effectiveness study will provide evidence for use of this advance care planning intervention among older adults with and without early Alzheimer's dementia. Specifically, ENACT Group Visits intervention may improve patient-centered care by increasing advance care planning documentation, advance care planning readiness, decision self-efficacy, and quality of communication related to decision making about care preferences.

National Institute of Health (NIH)
National Institute on Aging (NIA)
Research Project (R01)
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Termination was authorized on 9/28/2020. Clinical Management of Patients in Community-based Settings Study Section (CMPC)
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Onken, Lisa
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University of Colorado Denver
Internal Medicine/Medicine
Schools of Medicine
United States
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