This research project is in progress. PCORI will post the research findings on this page within 90 days after the results are final.
What is the research about?
Patients with serious illnesses such as heart failure or advanced cancer often have pain or other symptoms that are not fully managed, which results in suffering and stress. Palliative care focuses on improving quality of life by preventing and treating suffering. Patients with serious illness usually get palliative care at hospitals.
In this study, the research team is comparing two ways to care for patients with serious illness. The first is home-based care from a palliative care team. The second is enhanced usual care at clinics from doctors and care managers trained in palliative care. The team is looking at the effectiveness of these programs in improving patients’ symptoms and quality of life, and also on improving the quality of life for family members or friends who take care of them.
Who can this research help?
Healthcare organizations can use results from this study when planning how to care for patients with serious illness.
What is the research team doing?
The research team is recruiting 1,155 adult patients and 884 of their caregivers in California. Patients have a serious illness such as heart failure, advanced cancer, or chronic obstructive pulmonary disease.
The research team is assigning patients and their caregivers by chance to one of two groups. In the first group, patients and their caregivers receive care from a palliative care team. The team includes a doctor, a nurse, a social worker, and a chaplain. This team works with patients and caregivers to improve quality of life. Team members help patients manage physical symptoms such as pain, shortness of breath, and sleep problems. The team also gives patients and caregivers emotional and spiritual support. Patients and caregivers have home visits as needed, with at least one home visit each week from one team member. A helpline allows patients and caregivers to talk to a nurse and to schedule after-hours visits. The home-based palliative care continues as long as patients need or can benefit from it.
In the second group, patients get enhanced usual care at a primary care clinic. Doctors and care managers trained in palliative care provide care. Training includes ways to communicate with patients and ways to manage patients’ pain and symptoms. These doctors and care managers can also contact doctors who specialize in palliative care with questions about how to help patients.
At the start of the program and again one and two months later, patients and caregivers are answering questions through phone surveys. The research team is following patients and caregivers until the end of the study or until the patient passes away. Caregivers answer questions two months after a patient dies. The surveys ask patients and caregivers about physical and mental health symptoms. The surveys also ask patients questions about pain, coping with their illness, and their relationship with their doctor. The research team is also looking at how often patients go to the emergency room or stay at a hospital.
Patients, caregivers, and clinicians, such as doctors and nurses, are working with the research team to help guide the study. A health insurer and national patient and provider groups are helping to carry out the study.
Research methods at a glance
- Beth Caldwell, Patient Stakeholder
- Sara Barton, Caregiver Stakeholder
- James Peterson, Patient Stakeholder
- Michael Daniels, Caregiver Stakeholder
- Mimi Lee, Caregiver Stakeholder
- Bruce Gould, MD, Community Oncology Alliance Patient Advocate Network
- Erica Phung, American Heart Association
- Kathleen Kelly, Family Caregiver Alliance: National Center on Caregiving
Other Stakeholder Partners
- Shari M. Ling, MD, Centers for Medicare and Medicaid Services
- Mark Crafton, Joint Commission
- Bruce Smith, MD, Cambia Health Solutions
- Philip Chase, MD, HealthNet
- Marcy Carty, MD, Blue Cross Blue Shield of Massachusetts
- James Mittelberger, MD, United Healthcare/Optum
- Jon Broyles, Coalition to Transform Advanced Care
- Ira Byock, Providence Health and Services
- Marcus Thygeson, MD, Blue Shield of California
- Terry Hill, MD, Hill Physicians Medical Group
- Chris Van Gorder, Scripps Medical Group
- Melvyn Sterling, MD, St. Joseph’s Medical Group