Since palliative care (PC) practitioners are in short supply and patients with end-stage liver disease (ESLD) are in great need of their services, this project aims to show the benefit of PC delivered by hepatologists, the typical primary care providers for such patients.
Fourteen clinical centers will be randomly assigned to one of two approaches for PC care delivery; centers will offer either PC delivered by a PC consultant within a reasonable period of time (two weeks) after entry, or immediately by their own hepatologist who has received training in PC. The project team expects to show the latter approach will allow patients with ESLD to have a better quality of life than patients who receive PC from a PC consultant. The project team hopes to demonstrate that caregivers of patients who receive PC by their own hepatologist will show less distress.
The number of patients with ESLD is expected to increase over the next few decades. Literature shows that PC is infrequently given to these patients, and often it is delayed until the very end of life, when PC consultants only have hospice care to offer. Therefore, the earlier benefits of PC, including symptom management, disease acceptance, and caregiver support, are denied to them.
Patients with liver disease and caregivers were engaged to conceive and design this research. They affirmed the importance of the research topic and contributed to the specific aims, hypotheses, and methods. Patients/caregivers will remain involved throughout the study as part of the research advisory board, at the highest levels of governance. They will maintain the patient-centeredness of the research approach, and also provide guidance to investigators to overcome potential barriers, such as sluggish recruitment or suboptimal retention.
Provider stakeholders include hepatologists and PC providers. Hepatologists will learn how to incorporate key skills within their routine practice that will improve patients’ quality of life and will expand the scope and productivity of their practice. PC providers will benefit by having less pressure placed upon them to care for the backlog of patients with liver disease and their complex medical illnesses, the likes of which may impede their comfort in delivering PC in all but the last stages of life, when only comfort care can be offered.
Upon completion, providers will collaborate with the patient/caregiver research advisory board to analyze data, submit the analysis for scientific peer review, and present the findings at national meetings and in peer-reviewed medical journals. The project’s providers have been assembled strategically to sample various areas of the United States with representation of urban, suburban, and rural patients. The project’s clinical centers include investigators poised to quickly disseminate findings through Veterans Administration and non-Veterans Administration health systems, assuring maximal impact of this research.
*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.