# Comprehensive Outcome Assessment after Severe Acute Brain Injury: Advanced Symptoms and End-of-Life Care Needs

> **NIH NIH R01** · UNIVERSITY OF WASHINGTON · 2022 · $600,139

## Abstract

PROJECT SUMMARY/ABSTRACT
 Every 3 minutes in the United States, a person dies after suffering a severe acute vascular brain injury (SABI):
an ischemic stroke, intracerebral hemorrhage or cardiac arrest. SABI accounts for more than one in 10 deaths
globally and is a leading cause of serious long-term disability. Though advances in acute management of SABI
have improved the chance of good outcome for some, this condition continues to have a tremendous impact for
many due to high mortality, long-term disability, high symptom burden, complex care transitions, and changing
goals of care over time. Yet, as most studies focus on measures of functional outcome or mortality, evidence-
based information about more global multidimensional symptoms over time, and especially in the last weeks of
life, is lacking. In addition, family members of patients with SABI are at risk for long-term psychological distress
and reduced quality of life due to the burdens of surrogate decision-making, caregiving, and complicated grief.
In contrast to many other serious illnesses, such as cancer or dementia, where death often follows a progressive
decline in function, palliative care provision and serious illness conversations after SABI are uniquely challenging
due to the suddenness of onset and substantial prognostic uncertainty that includes the potential for recovery.
Palliative care specialists are rarely involved in the care of these patients. Preliminary studies have identified
substantial missed opportunities to identify and address symptoms such as pain or psychological distress, or to
prepare families for the high likelihood of death. In addition, hospital survivors are rarely discharged home and
face fragmented care across nursing facilities, rehabilitation centers and hospitals. Currently, there is a critical
gap in our understanding of the symptom burden among SABI patients and their families, as well as our
understanding of how palliative care is integrated into SABI management. To better understand how to re-
imagine care delivery models, we will conduct a multi-center prospective, longitudinal, mixed-methods cohort
study of 540 patients with SABI and their families to examine key modifiable healthcare system determinants
that may be targets for future intervention. The aims of this proposal are: 1) To define the trajectory and
determinants of multidimensional symptom burden and quality of dying among patients with SABI to facilitate
intervention development; 2) To identify key healthcare system factors and patient-related determinants
associated with psychological distress among family members of patients with SABI; and 3) To better understand
patient and family caregiver needs, identify gaps in care, and explore their perspectives on potential nursing and
palliative care interventions to address unmet needs across the SABI continuum with in-depth interviews. Results
of this work will allow us to target deficiencies in our health system through the design of s...

## Key facts

- **NIH application ID:** 10404565
- **Project number:** 5R01NR019268-02
- **Recipient organization:** UNIVERSITY OF WASHINGTON
- **Principal Investigator:** Claire Johanna Creutzfeldt
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2022
- **Award amount:** $600,139
- **Award type:** 5
- **Project period:** 2021-05-12 → 2026-03-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10404565

## Citation

> US National Institutes of Health, RePORTER application 10404565, Comprehensive Outcome Assessment after Severe Acute Brain Injury: Advanced Symptoms and End-of-Life Care Needs (5R01NR019268-02). Retrieved via AI Analytics 2026-05-26 from https://api.ai-analytics.org/grant/nih/10404565. Licensed CC0.

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