|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
COVID-19-Related Project Enhancement
People living with Parkinson’s disease (PD) may be at high risk of complications from COVID-19. Also, concerns about getting ill and social isolation due to COVID-19 may affect people living with PD and their families. In response to COVID-19, health systems have moved from in-person care to telehealth. Telehealth provides care to patients remotely using phone, video, or other devices to help manage care. While telehealth improves access, it may create other challenges for patients, families, and clinicians.
With this enhancement, the project team will adapt the team-based palliative care program for COVID-19. The team will:
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
To document implementation:
To assess healthcare and health outcomes:
Implementation Project Details
Implementation of PCORI-Funded Patient-Centered Outcomes Research Results (Limited PCORI Funding Announcement)
*All proposed enhancement projects, including requested project plans, budgets and milestone schedules, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award modification.
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?