# More than a Movement Disorder: Applying Palliative Care to Parkinson's Disease

> **NIH NIH R01** · UNIVERSITY OF COLORADO DENVER · 2020 · $521,009

## Abstract

Project Summary/Abstract: Parkinson's disease (PD) is the second most common neurodegenerative illness
affecting approximately 1.5 million Americans and is the 14th leading cause of death in the United States. PD is
traditionally described as a movement disorder with characteristic motor symptoms (e.g. tremor). However,
more recent research demonstrates the impact of nonmotor symptoms such as pain, depression, and
dementia on mortality, quality of life (QOL), nursing home placement and caregiver distress. Regarding models
of care for PD, evidence suggests that care including a neurologist results in lower mortality and nursing home
placement than care solely from a primary care physician. Unfortunately, there is also significant evidence that
many of the needs most important to PD patients and their caregivers (e.g. depression, planning for the future)
are poorly addressed under current models of care. Palliative care is an approach to caring for individuals with
life-threatening illnesses that focuses on addressing potential causes of suffering including physical and
psychiatric symptoms, psychosocial issues and spiritual needs. While developed for cancer patients, palliative
care approaches have been successfully applied in other chronic progressive illnesses including heart failure
and pulmonary disease. To date there have been minimal attempts to apply these principles to PD although
evidence suggests that PD patients' unmet needs under current models of care may be amenable to palliative
care. A small but growing cadre of centers offer outpatient palliative care for PD with early evidence of efficacy
and a randomized trial of an academic-based outpatient palliative care is underway led by investigators on this
proposal. While this work is critical to forwarding this field, further work is needed to provide a model that can
be widely disseminated. The current proposal addresses this gap by assessing the effectiveness and feasibility
of a novel community-based intervention that empowers community neurology practices to improve care for
PD patients and caregivers through palliative care training, coaching and telemedicine resources. We
hypothesize that this intervention will improve patient QOL and caregiver burden and will prove feasible and
acceptable to community providers. Our Specific Aims are to: 1) Determine the a) effectiveness and b)
feasibility of a novel community-based outpatient palliative care intervention for PD.; 2) Describe the effects of
a this intervention on patient and caregiver costs and service utilization; and 3) Identify opportunities to
optimize community-based palliative care for this population by: a) describing patient and caregiver
characteristics associated with intervention benefits; and b) through direct patient, caregiver and provider
interviews. Innovations of our approach include a novel model of providing disease-specific community-based
palliative care not dependent on limited palliative specialist resource...

## Key facts

- **NIH application ID:** 9960580
- **Project number:** 5R01NR016037-05
- **Recipient organization:** UNIVERSITY OF COLORADO DENVER
- **Principal Investigator:** BENZI M KLUGER
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $521,009
- **Award type:** 5
- **Project period:** 2016-09-15 → 2021-09-08

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/9960580

## Citation

> US National Institutes of Health, RePORTER application 9960580, More than a Movement Disorder: Applying Palliative Care to Parkinson's Disease (5R01NR016037-05). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/9960580. Licensed CC0.

---

*[NIH grants dataset](/datasets/nih-grants) · CC0 1.0*