# Longitudinal transdisciplinary Neuropalliative care Support for Patients with Severe Stroke and their Families

> **NIH NIH R56** · UNIVERSITY OF WASHINGTON · 2024 · $761,403

## Abstract

PROJECT SUMMARY/ABSTRACT: Stroke is not just an event but a chronic illness with tremendous impact.
Every year, 5 million people die of stroke, and another 5 million are left with disabling impairments of cognitive
and physical function. Progress in the acute treatment of stroke has reduced the number of patients who die but
also increased the number of survivors, who along with their family members are faced with many challenges
over the long term. These challenges range from cognitive and physical impairment to psychosocial and
existential suffering. One third of stroke survivors develop cognitive impairment due to vascular contributions to
cognitive impairment & dementia (VCID), which may worsen over time due to concomitant Alzheimer disease
and related dementia (ADRD) or immunological processes triggered by the stroke itself. Post-stroke cognitive
impairment reduces a patient’s ability to participate in rehabilitation and increases caregiver burden. Over 1 in 3
stroke survivors suffer advanced symptoms of pain, anxiety and depression, and these symptoms can become
more frequent or intense in those who are actively dying. As families face immense grief and prognostic
uncertainty, clinicians need to help them maintain hope but also understand the severity of the disease, so that
they can effectively discuss treatment options across the range of possible outcomes. About 1 in 3 patients die
in the hospital, most of them after a decision to withdraw life-sustaining treatments, such as mechanical
ventilation, artificial nutrition, and hydration. For those who survive a severe stroke, most patients and families
face a completely different reality with new social roles, high symptom burden, and frequent rehospitalization.
Therefore, we urgently need interventions to support patients and families as they grapple with often conflicting
realities of recovery, grief, adaptation and treatment decisions that continue for months or even years after the
stroke. We propose a randomized clinical trial of a “Longitudinal Transdisciplinary Neuropalliative Care Support”
(Lotus) team that follows patients and their families from early in their hospital course through six months and
provides targeted support as well as helping them ensure that treatment is line with their values. This team is led
by a specially trained Lotus nurse who works with a team of mental health, spiritual care, social work and
neuropalliative care providers, who will support the patient and family through a combination of in-person and
tele-health appointments. The team will implement complementary activities to enhance palliative care
integration into stroke care: awareness, assistance, adjustment, acceptance and alignment. We hypothesize that
this intervention compared to usual care will (1) improve psychological outcomes such as depression or anxiety
for patients and families and (2) increase ‘hospital-free days’ for patients and improve goal concordance,
meaning that patients will be mo...

## Key facts

- **NIH application ID:** 11119166
- **Project number:** 1R56AG086950-01A1
- **Recipient organization:** UNIVERSITY OF WASHINGTON
- **Principal Investigator:** Claire Johanna Creutzfeldt
- **Activity code:** R56 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $761,403
- **Award type:** 1
- **Project period:** 2024-08-15 → 2026-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11119166

## Citation

> US National Institutes of Health, RePORTER application 11119166, Longitudinal transdisciplinary Neuropalliative care Support for Patients with Severe Stroke and their Families (1R56AG086950-01A1). Retrieved via AI Analytics 2026-06-12 from https://api.ai-analytics.org/grant/nih/11119166. Licensed CC0.

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