PCORI funds implementation projects to promote the use of findings from PCORI-funded studies. This project focuses on implementing findings from the completed PCORI-funded research project: Does Palliative Care Improve Quality of Life for People with Parkinson's Disease and Reduce Caregiver Burden?
1. What were the results from the original PCORI-funded research study?
The project team performed a randomized controlled trial comparing the effectiveness of team-based outpatient palliative care (PC) to current standards of care for people living with Parkinson’s disease (PD). PC is an approach to serious illness that focuses on improving quality of life (QOL) by addressing medical symptoms (e.g., pain), psychological issues (e.g., grief), social support, spiritual well-being, and planning for the future. The project’s PC intervention consisted of quarterly visits with a team including a neurologist, social worker, chaplain, and nurse who used checklists to assess and manage potential PC issues with guidance from a palliative medicine specialist. The project team enrolled 210 persons living with PD and 175 care partners and found that, compared to usual care, persons receiving PC at six months had statistically and clinically significant improvements in their QOL, symptom control, grief, and advance care planning (discussing and putting in writing goals and wishes for future care). Caregivers had improved anxiety and spiritual well-being at six months and reduced caregiving burden at 12 months. These findings were consistent with patient and caregiver’s global ratings of improvement as well as qualitative interviews with patients and families. Overall, these results support other research suggesting that PC approaches are acceptable and effective in improving outcomes that matter to persons living with PD and their families.
Limitations of this study include being conducted at three academic sites with a strong investment in PC and low diversity among participants in terms of race, education, and geography. The project team anticipates that this intervention may need to be adapted to meet the resources of other sites interested in implementing this intervention and the needs of populations underrepresented in the parent study. To balance the need for flexibility with a desire to replicate the major effects of the parent study, the team chose an implementation strategy utilizing education, clinical support tools, and network building to flexibly support sites in attaining four core elements of effective PC for PD: a) advance care planning; b) nonmotor symptom management; c) caregiver support; and d) psychosocial support of patients. Sites may choose to integrate these elements into their care models through primary PC approaches (e.g., neurologists are trained to do advance care planning), creation of internal PC teams, referrals to other specialists, and/or developing community resources.
2. Why is this research finding important?
These research results are important because they suggest that: a) Outpatient PC can improve patient and family-centered outcomes beyond current standards of care; b) PC addresses known gaps in PD care including detection and management of nonmotor symptoms, caregiver support, and advance care planning; c) PC can be delivered by teams of clinicians without specialized PC training if they receive appropriate guidance; and d) Checklists and other clinical tools can be used to provide standardized and effective PC.
The study results also extend prior research findings. While other studies have demonstrated that persons living with PD have significant PC needs and suggested that PC may address these needs, this is the first large randomized trial to show that PC is more effective than usual care. Second, prior studies of PC for cancer and other chronic illnesses often relied upon specialized PC teams or palliative medicine specialists. In this project’s model, neurologist-led teams can be rapidly trained to follow checklists and function with minimal guidance from palliative medicine experts. This model is thus more sustainable and easier to implement as it can build on resources currently available in many academic PD centers and does not rely on a limited pool of PC experts.
3. What is the goal of this project?
The overarching goal is to make PC a core value and service of the Parkinson Foundation and its Center of Excellence (COE) network. The Parkinson Foundation is the leading support organization for direct PD care and education, and its network of 34 US COE provides direct care to over 145,000 persons living with PD annually. The project team will achieve this goal through three specific steps. First, it will determine the resources, readiness, and anticipated challenges of integrating PC for each COE and develop implementation plans for each COE based on this information. Second, the team will work with each COE through implementation activities including educational workshops on PC, sharing tools such as checklists, developing resources, and creating support networks to develop and foster PC within the COE. The team will measure the success of these activities at the end of the study by determining how many COEs now offer PC; how many of the project team’s core elements are integrated into these PC programs; whether these efforts positively impact patients and families; and how satisfied COE personnel are with this model of care. Finally, the team will survey COEs at the end of this project to see how many have plans to either maintain or further develop PC services.
4. What is the project team doing?
The project team will be working closely with the Parkinson Foundation leadership and COE faculty to:
- Evaluate the readiness and resources of each COE
- Prepare COE specific implementation plans
- Conduct educational workshops with COE on the core principles and skills of PC
- Provide training in the use of checklists and other tools helpful to PC
- Assist COE in developing internal PC teams and external PC networks
- Develop resources such as databases to support and track PC activities
- Provide ongoing coaching for COE
- Evaluate implementation efforts at the level of patients and families, clinicians, and COE
- Work with COE and PF leadership to maintain and expand gains made during the implementation period
This project has the potential to directly influence the care of over 145,000 persons living with PD annually to some degree as PC needs begin with diagnosis and may more intensively influence approximately 10 percent of this group who are struggling with more advanced disease or complex needs. The project team believes its intervention and implementation strategy will improve patient-centered outcomes by improving: planning for advanced disease; treatment of nonmotor symptoms; caregiver support; and addressing psychosocial needs.
5. How is the team evaluating this project?
The team will evaluate this project at the level of patients and families by estimating how many patients receive one or more elements of PC and how satisfied patients and families are with these services. At the level of clinicians, the project team will assess knowledge and comfort with PC and satisfaction with the project’s PC model. At the level of COE, the team will assess how many COE choose to adopt one or more elements of PC, how many choose to maintain or grow these services at the end of the study, and what are the most important facilitators or barriers to successful adoption and implementation. Finally, at the level of the Parkinson Foundation, the team will evaluate whether and how PC concepts and terminology influence the organization’s mission, vision, strategic plans, and COE criteria.
6. How is the team involving patients and others in making sure the findings reach people who can use them?
The core leadership and implementation team has worked with numerous stakeholders in the development of the project’s model of care and this proposal. The team will continue to involve key stakeholders to provide guidance throughout this proposal by meeting quarterly with three stakeholder advisory councils representing: patients and families; COE clinicians; and Parkinson Foundation leadership. The team will additionally work with other stakeholders such as hospitals and other community support organizations through its work with securing internal and external resources for individual COE.
7. How will this project help ensure future uptake and use of findings from patient-centered outcomes research?
There are currently five COE (including three from the parent project) that have been offering PC for PD for several years. The project team believes that its implementation activities will create a necessary foundation for other COE to adopt PC. The team further believes that directly seeing the benefits of PC to patients and families will be the most important factor sustaining its use and growth. As COE serve as hubs for training movement disorders clinicians, researchers, and the community, the project team believes that their adoption of PC will encourage widespread dissemination to other academic centers and community practices. The team also intends to approach international COE and other neurologic advocacy groups (e.g., the Alzheimer’s Association) should the team’s implementation approach prove successful. The team’s implementation science approach will prove useful to others looking to implement PC for other conditions. Lastly, as COE are centers of innovation and research, the team anticipates integration of PC into their projects, including their current efforts to reduce healthcare disparities in PD.
Related PCORI-funded Research Project
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.