Skip to main content
Patient-Centered Outcomes Research Institute
Patient-Centered Outcomes Research Institute
  • Blog
  • Newsroom
  • Find It Fast
  • Help Center
  • Subscribe
  • Careers
  • Contact Us

PCORI

Patient-Centered Outcomes Research Institute

Search form

  • About Us
    Close mega-menu

    About Us

    • Our Programs
    • Governance
    • Financials and Reports
    • Procurement Opportunities
    • Our Staff
    • Our Vision & Mission
    • Contact Us

    Fact Sheets: Learn More About PCORI

    Download fact sheets about out work, the research we fund, and our programs and initiatives.

    Find It Fast

    Browse through an alphabetical list of frequently accessed and searched terms for information and resources.

    Subscribe to PCORI Email Alerts

    Sign up for weekly emails to stay current on the latest results of our funded projects, and more.

  • Research & Results
    Close mega-menu

    Research & Results

    • Explore Our Portfolio
    • Research Fundamentals
    • Research Results Highlights
    • Putting Evidence to Work
    • Peer Review
    • Evidence Synthesis
    • About Our Research

    Evidence Updates from PCORI-Funded Studies

    These updates capture highlights of findings from systematic reviews and our funded research studies.

    Journal Articles About Our Funded Research

    Browse through a collection of journal publications that provides insights into PCORI-funded work.

    Explore Our Portfolio of Funded Projects

    Find out about projects based on the health conditions they focus on, the state they are in, and if they have results.

  • Topics
    Close mega-menu

    Topics

    • Addressing Disparities
    • Arthritis
    • Asthma
    • Cancer
    • Cardiovascular Disease
    • Children's Health
    • Community Health Workers
    • COVID-19
    • Dementia and Cognitive Impairment
    • Diabetes
    • Kidney Disease
    • Medicaid
    • Men's Health
    • Mental and Behavioral Health
    • Minority Mental Health
    • Multiple Chronic Conditions
    • Multiple Sclerosis
    • Obesity
    • Older Adults' Health
    • Pain Care and Opioids
    • Rare Diseases
    • Rural Health
    • Shared Decision Making
    • Telehealth
    • Transitional Care
    • Veterans Health
    • Women's Health

    Featured Topic: Women's Health

    Learn more about the projects we support on conditions that specifically or more often affect women.

  • Engagement
    Close mega-menu

    Engagement

    • The Value of Engagement
    • Engagement in Health Research Literature Explorer
    • Influencing the Culture of Research
    • Engagement Awards
    • Engagement Resources
    • Engage with Us

    Engagement Tools and Resources for Research

    This searchable peer-to-peer repository includes resources that can inform future work in patient-centered outcomes research.

    Explore Engagement in Health Literature

    This tool enables searching for published articles about engagement in health research.

    Research Fundamentals: A New On-Demand Training

    It enables those new to health research or patient-centered research to learn more about the research process.

  • Funding Opportunities
    Close mega-menu

    Funding Opportunities

    • What & Who We Fund
    • What You Need to Know to Apply
    • Applicant Training
    • Merit Review
    • Awardee Resources
    • Help Center

    PCORI Funding Opportunities

    View and learn about the newly opened funding announcements and the upcoming PFAs in 2021.

    Tips for Submitting a Responsive LOI

    Find out what PCORI looks for in a letter of intent (LOI) along with other helpful tips.

    PCORI Awardee Resources

    These resources can help awardees in complying with the terms and conditions of their contract.

  • Meetings & Events
    Close mega-menu

    Meetings & Events

    • Upcoming
    • Past Events

    Special PCORI Webinar: February 2, 2pm ET

    Hear from PCORI leaders about ways to get involved in PCOR, improvements to our funding opportunities, and more. Register

    Confronting COVID-19: A Webinar Series

    Learn more about the series and access recordings and summary reports of all six sessions.

    2020 PCORI Annual Meeting

    Watch recordings of all sessions, and view titles and descriptions of the posters presented at the virtual meeting.

You are here

  • Research & Results
  • Explore Our Portfolio
  • Does Palliative Care Improve Quality ...

This project has results

Does Palliative Care Improve Quality of Life for People with Parkinson's Disease and Reduce Caregiver Burden?

Sign Up for Updates to This Study  

Results Summary and Professional Abstract

Results Summary

Results Summary

Download Summary Español (pdf) Audio Recording (mp3)

What was the research about?

In the United States, about 1.5 million people have Parkinson’s disease. This disease can cause

  • Poor balance
  • Shaking in hands, legs, or face
  • Pain, fatigue, and depression
  • Dementia, including memory loss, trouble doing daily tasks, and mood changes

In this study, the research team tested a palliative care program for people with Parkinson’s disease and their caregivers. Palliative care focuses on easing suffering and improving quality of life for people with a serious illness and their families. Care can include physical, emotional, social, and spiritual support.

The research team compared the palliative care program plus usual care with usual care alone. The team looked at patients’ quality of life and caregiver burden.

What were the results?

After six months, the two groups differed in quality of life. Patients who received palliative care plus usual care had improved quality of life. Patients who received usual care alone had worse quality of life. The two groups didn’t differ in caregivers’ ratings of burden. Both groups reported reduced burden over time.

Who was in the study?

The study included 210 patients with Parkinson’s disease and 175 of their caregivers. Patients’ average age was 70.

Among patients who received palliative care, 94 percent were white, 2 percent were Asian, 1 percent were African American, and 3 percent were another race; 61 percent were men.

Among patients who received usual care alone, 89 percent were white, 4 percent were Asian, 2 percent were African American, 2 percent were more than one race, 1 percent was Native American, and 2 percent were another race; 67 percent were men.

What did the research team do?

The research team assigned patients and their caregivers by chance to receive palliative care plus usual care or usual care alone. Usual care included care from a primary care doctor and a neurologist not trained in palliative care.

The palliative care team included a neurologist trained in palliative care, a nurse, a social worker, and a chaplain. Patients receiving palliative care had visits from the care team every three months in person, by phone, or online. They received check-in calls one week after each visit and again six weeks later. The care team sent notes from the visits to the patient’s primary care doctor.

Patients and caregivers answered surveys during clinic visits at the start of the study and then every three months for one year. Patient surveys had questions about quality of life, including physical health and quality of living situation. Caregiver surveys had questions about burden, such as having time for themselves.

Patients, caregivers, and advocacy groups gave input on the study.

What were the limits of the study?

Most patients and caregivers were white. Results may differ for people from other races. This study took place in three academic clinics. Findings may differ in other settings.

Future research could include more diverse patients and caregivers and look at ways to provide palliative care in community settings.

How can people use the results?

Clinicians can use the results when considering ways to help people with Parkinson’s disease and their caregivers manage their care.

Professional Abstract

Professional Abstract

Objective

To examine the effectiveness of usual care plus outpatient palliative care compared with usual care alone for improving quality of life for patients with Parkinson’s disease and reducing burden on their caregivers

Study Design

Design Element Description
Design Randomized controlled trial
Population 210 patients with Parkinson’s disease and moderate to high palliative care needs and 175 of their caregivers
Interventions/
Comparators
  • Usual care plus care from an outpatient palliative care team consisting of a neurologist with palliative care expertise, a nurse, a social worker, and a chaplain
  • Usual care alone
Outcomes Patient quality of life, caregiver burden
Timeframe 6-month follow-up for primary outcome

This randomized controlled trial examined the effectiveness of usual care plus outpatient palliative care compared with usual care alone in improving quality of life for patients with Parkinson’s disease and reducing burden on their caregivers.

Researchers randomly assigned patients to one of two groups. Patients in both groups received usual care, which included care from a primary care provider (PCP) and a neurologist who did not have specialized training in palliative care. In one group, patients received additional care from an outpatient palliative care team. Visits occurred every three months either via telemedicine or at one of three university clinics, with telephone follow-up one week after each visit and again six weeks later. Palliative teams met daily to coordinate care and sent summaries of visits to the patient, caregiver, PCP, and neurologist. The study included 210 patients with Parkinson’s disease and 175 of their primary caregivers, including family members and friends who helped on a regular basis. Patients were 70 years old on average. Among patients who received usual care alone, 89% were white, 4% were Asian, 2% were African American, 2% were more than one race, 1% was Native American, and 2% were other races; 67% were male. Among patients who received usual care plus palliative care, 94% were white, 2% were Asian, 1% was African American, and 3% were other races; 61% were male.

Patients and caregivers completed surveys during clinic visits at study enrollment and then every three months for one year. Patient surveys assessed quality of life, including quality of living situation and physical health. Caregiver surveys assessed burden, such as how often caregivers had time for themselves.

Patients, caregivers, and advocacy organizations provided input on planning and conducting the study.

Results

At six months, the two groups differed in quality of life (p=0.027); patients who received usual care plus palliative care reported improved quality of life, while patients who received usual care alone reported worse quality of life.

At six months, the two groups did not differ significantly in caregiver burden. Caregiver burden had decreased for both groups, but the change over time was only significant for those who received usual care plus palliative care (p=0.0001).

Limitations

Most participants were white; results may differ for other races and ethnicities. The three academic health clinics that implemented the palliative care model served patients with high socioeconomic status, and staff had a high level of experience in palliative care. Results may differ in other settings.

Conclusions and Relevance

Compared with usual care alone, the addition of outpatient palliative care improved patients’ quality of life at six months, but did not affect caregiver burden.

Future Research Needs

Future research could examine palliative care in community settings and with more diverse patients and examine ways care can better address caregiver burden.

Final Research Report

View this project's final research report.

Related PCORI Dissemination and Implementation Project

Implementing Team-based Outpatient Palliative Care in Parkinson Foundation Centers of Excellence

Journal Articles

Article Highlight: This project compared the effectiveness of team-based outpatient palliative care to current standards of care for people living with Parkinson’s disease. The palliative care intervention included quarterly visits with a team that included a neurologist, social worker, chaplain, and nurse who used checklists to assess and manage palliative care.

The project team reported in JAMA Neurology that, compared to usual care that used a neurologist and primary care practitioner, patients receiving palliative care at six months had improvements in their quality of life, symptom control, grief, and advance care planning. Caregivers had improved anxiety and spiritual well-being at six months and reduced caregiving burden at 12 months. A related editorial calls palliative care “the next frontier” in treating Parkinson’s disease.

Results of This Project

JAMA Neurology

Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial

Related Articles

Parkinsonism & Related Disorders

Predictors of general and health-related quality of life in Parkinson's disease and related disorders including caregiver perspectives

Annals of Palliative Medicine

Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners

Annals of Palliative Medicine

Telehealth increases access to palliative care for people with Parkinson's disease and related disorders

Annals of Palliative Medicine

Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach

Annals of Palliative Medicine

Correlates of spiritual wellbeing in persons living with Parkinson disease

Parkinsonism & Related Disorders

Measuring quality of life in palliative care for Parkinson's disease: A clinimetric comparison

Neurology

Framing advance care planning in Parkinson disease: Patient and care partner perspectives

Contemporary Clinical Trials

Does outpatient palliative care improve patient-centered outcomes in Parkinson's disease: Rationale, design, and implementation of a pragmatic comparative effectiveness trial

Annals of Palliative Medicine

Implementation Issues Relevant to Outpatient Neurology Palliative Care

Neurology

The rest of the iceberg

Npj Parkinson's Disease

Palliative care for Parkinson's disease: suggestions from a council of patient and carepartners

Parkinsonism & Related Disorders

Palliative care and Parkinson's disease: Meeting summary and recommendations for clinical research

Engagement Resources

Study Participant Newsletter

More on this Project  

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments. 

Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:

  • The reviewers asked for more examples of the interventions conducted in the palliative care arm of the study. The researchers included an appendix that detailed the clinical care checklists that the intervention team used. The researchers also added a reference to an article about the clinical model.
  • The reviewers requested more information about the secondary outcomes, which were previously only listed by name. The researchers added a line about each scale used, giving examples of items from the scale and how they rated them.
  • The reviewers found it interesting that the relative changes in the primary outcome, quality of life (QOL), in the two arms of the study occurred early on and then seemed to remain relatively stable. The researchers commented that they did not know why there was a change in QOL in both groups at the first time point, three months, that then stabilized. They said a larger longitudinal study would be needed to address that question.
  • The reviewers recommended adding discussion and context about why participants in the study were generally white and of high socioeconomic status, despite the researchers’ efforts to recruit a broader sample. The researchers said that they did not collect demographic data for people who they deemed ineligible in the initial telephone screening phase of the study, but they believed that the people selected were demographically similar to those screened. So, they believed that lack of referrals or interest in the study, rather than study procedures, was the main barrier to recruiting a more broadly representative group. The researchers noted that in Parkinson’s disease care in general, African Americans are less likely to see a neurologist or a movement disorders specialist, and patients were less likely to hear about the study if they did not see such specialists. The researchers also added information to the report regarding their efforts to recruit participants from rural and inner-city populations, which were not very successful. They acknowledged that future studies would need to target these disadvantaged and minority populations to improve the diversity of the participant pool.

Conflict of Interest Disclosures

View the COI disclosure form.

Project Details

Principal Investigator
Benzi Kluger, MD, MS
Project Status
Completed; PCORI Public and Professional Abstracts, and Final Research Report Posted
Project Title
Does Outpatient Palliative Care Improve Patient-Centered Outcomes in Parkinson's Disease?
Board Approval Date
April 2015
Project End Date
December 2019
Organization
University of Colorado Denver
Year Awarded
2015
State
Colorado
Year Completed
2019
Project Type
Research Project
Health Conditions  
Neurological Disorders
Parkinson's Disease
Intervention Strategies
Telemedicine
Other Health Services Interventions
Technology Interventions
Populations
Older Adults
Rural
Urban
Veterans
Funding Announcement
Improving Healthcare Systems
Project Budget
$2,008,499
DOI - Digital Object Identifier
10.25302/08.2019.IHS.1408.20134
Study Registration Information
HSRP20153580
NCT02533921
Page Last Updated: 
October 7, 2020

About Us

  • Our Programs
  • Governance
  • Financials and Reports
  • Procurement Opportunities
  • Our Staff
  • Our Vision & Mission
  • Contact Us

Research & Results

  • Explore Our Portfolio
  • Research Fundamentals
  • Research Results Highlights
  • Putting Evidence to Work
  • Peer Review
  • Evidence Synthesis
  • About Our Research

Engagement

  • The Value of Engagement
  • Engagement in Health Research Literature Explorer
  • Influencing the Culture of Research
  • Engagement Awards
  • Engagement Resources
  • Engage with Us

Funding Opportunities

  • What & Who We Fund
  • What You Need to Know to Apply
  • Applicant Training
  • Merit Review
  • Awardee Resources
  • Help Center

Meetings & Events

February 2
PCORI 2021 and Beyond: Opportunities for Funding and Involvement in Patient-Centered Research
February 9
Board of Governors Meeting: February 9, 2021
February 11
Advisory Panel on Patient Engagement Winter 2021 Meeting

PCORI

Footer contact address

Patient-Centered Outcomes
Research Institute

1828 L Street, NW, Suite 900
Washington, DC 20036
Phone: (202) 827-7700 | Fax: (202) 355-9558
[email protected]

Subscribe to Newsletter

Twitter Facebook LinkedIn Vimeo

© 2011-2021 Patient-Centered Outcomes Research Institute. All Rights Reserved.

Privacy Policy | Terms of Use | Trademark Usage Guidelines | Credits | Help Center