Project Summary

PCORI implementation projects promote the use of findings from PCORI-funded studies in real-world healthcare and other settings. These projects build toward broad use of evidence to inform healthcare decisions.

This PCORI-funded implementation project is expanding the use of a team-based palliative care program shown to improve quality of life for patients with Parkinson’s disease. 

Parkinson’s disease is the second most common neurodegenerative condition in the United States. It affects 1 to 2 percent of people over age 60. This disease can cause poor balance; shaking in the hands, legs, or face; and pain, fatigue, dementia, and depression. Progress has been made in treating patients’ motor symptoms. But gaps remain in addressing other patient concerns.

Implementation Project Summary

What is the goal of this implementation project?

Palliative care focuses on easing suffering and improving quality of life for people with a serious illness and their families. A PCORI-funded study found that a team-based palliative care program improved quality of life, symptom burden, and grief for patients with Parkinson’s disease. It also improved caregiver burden, anxiety, and spiritual well-being for family care partners. The program addresses patients’ pain, emotional well-being, social support, and care planning, as well family care partner support.

This project will expand the team-based palliative care program to medical centers across the country that serve patients with Parkinson’s disease.

What will this project do?

The project team is rolling out the program as part of standard care at 34 medical centers designated as Centers of Excellence by the Parkinson’s Foundation. The centers vary in size, type, staffing, and resources to support staff. The centers serve diverse patient populations.

The project team is working with staff at the centers to put the program in place. The team is

  • Helping centers develop palliative care teams, which include a neurologist, nurse, social worker, chaplain, and primary care doctor
  • Adapting patient screening and other processes for each center
  • Adapting clinician checklists and other materials as needed
  • Training staff at the centers and providing ongoing coaching, support, and feedback

What is the expected impact of this project?

This project will establish palliative care as a core service at Parkinson Foundation Centers of Excellence, consistent with the foundation’s goals for patient care.

At least 54,000 patients will receive team-based palliative care during the project. All centers have committed to sustaining the program after the project ends. The evaluation will confirm that the program is working as intended at these centers to improve patients’ quality of life.

More about this implementation project:

Stakeholders Involved in This Project

  • Parkinson’s Foundation
  • Parkinson’s Foundation Center of Excellence Clinician Advisory Council
  • Medical directors of each Center of Excellence
  • Patient and family care partner advisory council

Implementation Strategies

  • Assess for readiness and conduct resource assessments at sites.
  • Adapt the program based on sites’ needs and to work with sites’ existing resources and workflows.
  • Provide sites with tools to support implementation, including checklists and other palliative care clinical support tools, and databases to track palliative care delivery at sites.
  • Conduct educational workshops on palliative care.
  • Train staff to deliver the program, including conducting educational workshops on palliative care.
  • Conduct cyclical small tests of change.
  • Provide educational materials to patients
  • Identify and prepare clinical and administrative champions at sites.
  • Provide technical assistance to sites, including consultation.
  • Partner with national stakeholder organization to develop plans for further program scaleup.

Evaluation Outcomes

To document implementation:

  • Number of patients receiving palliative care services
  • Physician knowledge and comfort with palliative care
  • Additional measures of adoption and fidelity of program delivery
  • Implementation barriers and facilitators

To assess healthcare and health outcomes:

  • Quality of life
  • Emotional well-being
  • Patient satisfaction
  • Medication use
  • Pain
  • Completion rates for advance directives

Journal Citations

Project Information

Benzi M. Kluger, MD, MS
Nicole Yarab, RN
University of Rochester
$1,796,681

Key Dates

March 2020
November 2023
2020

Initial PCORI-Funded Research Study

This implementation project focuses on putting findings into practice from this completed PCORI-funded research study: Does Palliative Care Improve Quality of Life for People with Parkinson's Disease and Reduce Caregiver Burden?

Tags

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Project Details Type
Last updated: May 9, 2022