# PRAGMATIC TRIAL TO IMPROVE COMMUNICATION FOR PRIMARY CARE PATIENTS WITH ADRD

> **NIH NIH R33** · JOHNS HOPKINS UNIVERSITY · 2020 · $1,346,442

## Abstract

A. Abstract- Transition to R33 Phase
Alzheimer’s Disease and Related Dementias (ADRD) are among the most profoundly disabling and costly of all
health conditions and the 5th leading cause of death. Family and friends (hereafter referred to as family) are
at the forefront of managing ADRD across the continuum of care. Clinicians rely on the substituted judgement
of family for persons who lack decisional capacity toward the end of life. However, family members are not
routinely engaged in discussions about prognosis and are often poorly prepared for surrogate decision-
making. Compared to persons without ADRD, persons living with ADRD are less likely to complete an
advance directive or formally designate a surrogate decision-maker, placing them at heightened risk for
unnecessary suffering and high utilization of burdensome and costly end-of-life care.
Advance care planning (ACP) is a communication process that supports adults at any age or stage of health in
understanding and sharing their personal values, life goals, and preferences regarding future medical care.
Early initiation of ACP is an imperative in ADRD care due to the long course of illness and its progressive and
devastating effects on decision-making capacity. Little attention has been directed at identifying strategies that
improve ACP for persons with ADRD and their family in primary care, which is the most common setting of
initial diagnosis and ongoing medical management.
Our work establishes the benefit of novel strategies to normalize ACP and engage family in primary care
visits and electronic interactions. SHARING Choices (Sharing access to Health records, Agenda setting
and RespectING Choices to Engage Families) is a multicomponent communication intervention that seeks to
proactively engage family members and support ACP in primary care. SHARING Choices includes 1) a letter
from the clinic introducing an initiative to prepare persons and families for ACP, 2) access to a facilitator
trained to lead ACP discussions, 3) person-family agenda-setting to align perspectives about the role of
family and stimulate discussion about ACP,19 4) facilitated registration to the patient portal (for patient and
family) to extend electronic interactions and information access to family, and 5) education and resources
about ADRD for clinic staff. Each component improves a range of communication outcomes, but has not
previously been applied as an integrated model or studied in persons with ADRD, as we propose. The study
encompasses two phases aligned with Stage I (refinement, pilot testing) and Stage IV (effectiveness) of the
behavioral intervention development Stage Model and will be conducted in partnership with 2 diverse health
systems in the MidAtlantic region. The model has been refined and pilot tested through the R61 mechanism.
The 3 aims specified in our original R61/R33 proposal remain the same except that the number of clinics better
reflect the current status of primary care for our orga...

## Key facts

- **NIH application ID:** 10223590
- **Project number:** 4R33AG061882-03
- **Recipient organization:** JOHNS HOPKINS UNIVERSITY
- **Principal Investigator:** SYDNEY MORSS DY
- **Activity code:** R33 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $1,346,442
- **Award type:** 4N
- **Project period:** 2018-09-30 → 2023-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10223590

## Citation

> US National Institutes of Health, RePORTER application 10223590, PRAGMATIC TRIAL TO IMPROVE COMMUNICATION FOR PRIMARY CARE PATIENTS WITH ADRD (4R33AG061882-03). Retrieved via AI Analytics 2026-05-25 from https://api.ai-analytics.org/grant/nih/10223590. Licensed CC0.

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