The Patient-Centered Outcomes Research Institute’s (PCORI) Board of Governors today approved nearly $74 million to fund seven studies comparing the effectiveness of different strategies for delivering palliative care. These projects will focus on advanced care planning for patients with serious illnesses and examine which approaches to delivering palliative care to patients in the community work best to improve quality of care and quality of life.
Adults with advanced illnesses, as well as their caregivers, experience a high burden of physical and psychosocial symptoms. Patients who receive palliative care services that address these symptoms report significant improvements in their quality of life as well as fewer hospitalizations and emergency department visits. However, access to palliative care services is often limited to inpatient hospitals and hospice settings, and many patients and their caregivers report unmet needs for these services in their communities.
“This research will address an essential health care need: the effective and efficient delivery of palliative care,” said PCORI Executive Director Joe Selby, MD, MPH. “With our aging population, there is an increased demand for these services and an urgent need to understand the best ways to provide them. The comparative clinical effectiveness research, or CER, that PCORI was established to fund will fill critical gaps in our knowledge and ultimately help people make better informed decisions about palliative care that fit their needs and preferences.”
The seven awards approved today are:
- A $14 million study based at Kaiser Foundation Research Institute comparing a physician-led versus a nurse-led model of delivering home-based palliative care services to determine which is most effective at improving outcomes that are important to patients — short-term symptom improvement and more days at home in the last six months of life — as well as reducing caregiver burden.
- An $8.4 million project out of UCLA that will assess which of three approaches to advance care planning, each initiated during primary care visits, is most effective at encouraging patients to complete advance directives. The study focuses on serving the goals and needs of patients with cancer, or heart or lung disease, and their caregivers.
- A $5.8 million study at Duke University examining whether a structured approach to advance care planning called Respecting Choices or a more patient-guided self-management method called Five Wishes is more effective in increasing participation in planning and improving quality of care among African Americans. Researchers will also monitor whether the care planning facilitator’s race affects patients’ participation.
- A $14 million study at the Albert Einstein Healthcare Network that will evaluate whether palliative care for people with end-stage liver disease delivered by the patients’ liver specialist is as effective in improving quality of life and quality of care, and reducing caregiver burden, as care delivered by a palliative care specialist.
- An $8 million project from Oregon Health and Science University that will compare two models for serious illness care. In one model, a primary care clinician works with the patient to develop a healthcare plan. The other team-based model, in which care managers, social workers and community health workers share responsibility for developing a plan with the patient.
- A $12.3 million study from New York University School of Medicine that focuses on people with advanced illnesses who seek treatment from the emergency department in the last months of life. This stage, is when palliative care planning, which involves doctors, nurses, patients and families, often occurs. The study will test how effective nurse-led case management via phone is compared with outpatient care delivered by palliative care specialists in an outpatient setting. The study is looking at how well the two methods enhance patients’ quality of life and reduce healthcare use, loneliness and burden on caregivers.
- A $10.9 million study based at Massachusetts General Hospital focusing on the supportive care needs of people with advanced lung cancer and their caregivers. It will assess whether care delivered by palliative care specialists to patients in their homes via telemedicine is equally effective in improving quality of life, quality of care, and caregiver burden as a traditional, integrated approach in which patients see palliative care specialists in person during clinic visits with their cancer specialists.
In addition to these awards, the Board approved another $35.7 million to support 15 studies focusing on other conditions and problems that impose high burdens on patients, caregivers, and the healthcare system, as well as $10 million for two studies of strategies to prevent unsafe opioid prescribing. The Board also approved the selection or reappointment of 33 people to serve on PCORI’s seven multi-stakeholder advisory panels.
With these latest awards, PCORI’s Board has approved $1.7 billion in funding since 2012 for 600 patient-centered CER studies and related projects to enhance the methods and infrastructure needed to support rigorous, efficient CER. All awards are approved pending completion of a business and programmatic review by PCORI staff, as well as a completion of a formal award contract.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.