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?
The number of patients with end-stage liver disease, or ESLD, doubled from 2001 to 2013 and continues to grow. Patients with the disease can suffer from serious health problems that affect their quality of life, self-esteem, and ability to care for themselves. Patients may benefit from palliative care as they seek treatment for ESLD. Palliative care focuses on improving quality of life rather than on curing illness. This type of care aims to give relief from the symptoms of a disease, physical and emotional pain, and stress. Palliative care can help caregivers, family and friends who help patients regularly, as well as patients. Palliative care can help patients accept a diagnosis, manage symptoms, and get support from caregivers.
Doctors who treat patients with ESLD usually do not provide palliative care. Instead, they refer patients to palliative care providers. However, these providers are in short supply, and patients with ESLD often do not get palliative care or get it only at the very end of life.
This study is examining whether getting palliative care from a doctor who also treats ESLD versus getting palliative care from a palliative care provider improves quality of life for patients with ESLD and for their caregivers.
Who can this research help?
Patients with ESLD and their doctors can use findings from the study to learn about options to improve quality of life for patients and caregivers.
What is the research team doing?
Researchers at 14 medical centers are enrolling 1,260 patients with ESLD. The patients have new complications because of ESLD or have had a health problem caused by ESLD that led to a hospital stay within the past six months. Patients may also join the study if they have liver cancer. Patients join the study with one of their caregivers.
The research team is assigning medical centers, by chance, to one of two groups. Patients at the first group of centers see a palliative care provider within two weeks of joining the study. Patients at the second group of centers don’t see a palliative care provider; they receive palliative care from the same doctor who is treating their ESLD. These doctors take online training about providing palliative care to patients with liver disease. The training covers caregivers’ needs, as well as patients’ needs, symptoms, and emotional and mental issues. Both groups of patients have in-person visits for palliative care at the beginning of the study and after one, two, and three months.
The research team is tracking changes in patients’
- Quality of life
- Symptoms burden
- Depression symptoms
- Satisfaction with care
- Visits to the emergency room and hospital stays
The team is also tracking changes in
- Burden that caregivers feel
- Caregivers’ quality of life
The research team is also speaking with patients, caregivers, and healthcare providers in each group to compare experiences with giving and receiving palliative care.
An advisory board of patients with liver disease and caregivers is helping to make sure the research meets patients’ and caregivers’ needs. These board members are helping to structure the training program for doctors. The advisory board is also helping the research team solve problems in recruiting patients and keeping patients involved in the study. Healthcare providers are working with the advisory board to analyze data from the study.