Goals of Care Addressing Disparities and Variation for Alzheimer's Disease Nursing Home Care at End of Life
Funded Grant
Overview
Affiliation
View All
Overview
description
ABSTRACT Alzheimer’s disease and related dementias (ADRD) adversely impact Americans. Most people with ADRD and their family decision-makers prioritize comfort, yet burdensome interventions and lack of shared decision making about goals of care are common in NHs. Evidence supports systematic communication interventions to address practice variation in shared decision making about treatment, with resulting difference in quality of care and outcomes. An experienced team of investigators proposes GOC ADVANCE (Goals of Care- Addressing Variation for Alzheimer's disease Nursing home Care at End of life), a clinical trial conducted in NHs with a high proportion of residents with dementia. The over-arching premise is that GOC ADVANCE will improve communication and treatment decisions in late-stage ADRD. Research design uses the RE-AIM framework to assess implementation and impact, in partnership with Community Advisors to optimize implementation. The Specific Aims are: Aim 1. To conduct a real-world efficacy cluster RCT (NIA Stage III) comparing 3-month communication outcomes among ADRD decision-makers in NHs randomized to the GOC ADVANCE intervention vs usual care. NHs with a high proportion of residents with dementia will be randomized to intervention vs. usual care control (16 NHs, N=8 NHs/arm). Participants will be family decision-makers and NH residents with latestage ADRD (n=300, 150 dyads/arm). Communication outcomes ascertained in decision-maker interviews at 3 months are: Quality of Communication (primary), perceived goal concordance with NH clinicians (secondary), and Feeling Heard and Understood (secondary). Aim 2. To compare 6-month care management outcomes (secondary) between residents in NHs randomized to the GOC ADVANCE intervention vs usual care. Outcomes ascertained in decision-maker interviews are: % of decision-makers reporting new decisions for limitations on resuscitation, tube feeding, hospitalization, % with decisions to initiate comfort care or hospice, and number of hospital transfers per persondays. Aim 3. To evaluate the implementation of the GOC ADVANCE intervention. Guided by RE-AIM (Reach, Effectiveness, Adoption, Implementation and Maintenance), implementation will be evaluated for all dyads using: 1. Quantitative measures (e.g., % decision-makers who viewed the video) and 2. Qualitative data obtained from semi-structured interviews with NH staff (n=16) and family decision-makers (total, N=32) about their experience with the intervention.
