Developing the evidence base for palliative care: formation of the Palliative Care Research Cooperative and its first trial.

The field of palliative care and hospice has gained accreditation, with a growing cadre of specialists being trained, but there is a dearth of robust research evidence to guide clinical practice. After 2 years of planning, a group of senior investigators convened in January 2010 to explore the possibility of forming a research cooperative group dedicated to advancing the evidence base in palliative care and hospice. The meeting launched the Palliative Care Research Cooperative (PCRC) with an initial national/international membership, and a plan for developing policies and procedures. Proof of the concept for the PCRC is being established through the design, conduct, and dissemination of a multi-site clinical trial targeting a consensually selected, clinically relevant research question: Should patients who are taking statins for primary or secondary prevention, and who have a prognosis of < 6 months, discontinue these medications? A core group of PCRC members have developed the flagship study for the PCRC, evaluating the discontinuation of statin medications in the palliative care setting. Using the proposed trial as a case study, we underscore several approaches to overcoming common research challenges in end-of-life settings, including: 1) study design, to ensure feasibility and timeliness; 2) strategies to overcome barriers to research in this population; 3) data collection and management, to reduce the burden on patients, caregivers, research personnel, and sites while maximizing quality and efficiency; and 4) agenda setting. This article describes the rationale for convening the PCRC and highlights core principles for developing the evidence base in palliative medicine.

Duke Scholars

Author Thomas William LeBlanc Medicine, Hematologic Malignancies and Cellular Therapy