Goals of Care Addressing Disparities and Variation for Alzheimer's Disease Nursing Home Care at End of Life

Alzheimer’s disease and related dementias (ADRD) disproportionately impact Black 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 with a high proportion of Black residents. Evidence supports systematic communication interventions to address practice variation in shared decisionmaking 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 Black American residents. The over-arching premise is that GOC ADVANCE will improve communication and treatment decisions in latestage 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 > 35% Black residents will be randomized to intervention vs. usual care (16 NHs, N=8 NHs/arm). Participants will be family decision-makers and NH residents with late-stage ADRD (n=300, 150 dyads/arm, >35% Black American). 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 Black and White 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; Black, N=16; White, N=16) about their experience with the intervention. Project Number: 1R01AG091541-01A1 | Fiscal Year: 2025 | NIH Institute/Center: National Institute on Aging (NIA) | Principal Investigator: LAURA HANSON (+1 co-PI) | Institution: UNIV OF NORTH CAROLINA CHAPEL HILL, CHAPEL HILL, NC | Award Amount: $843,404 | Activity Code: R01 | Study Section: Interdisciplinary Clinical Care in Specialty Care Settings Study Section[ICSC] View on NIH RePORTER: https://reporter.nih.gov/project-details/11230051