Challenges to and lessons learned from conducting palliative care research

Area of Science:

• Oncology
• Health Services Research
• Clinical Trials

Background:

• National Institutes of Health funded 16 investigators in 2005 to address barriers in cancer symptom management.
• Investigators encountered challenges in implementing their research projects.
• Palliative and end-of-life care research faces significant implementation hurdles.

Purpose of the Study:

• To identify and analyze the challenges faced by investigators conducting cancer symptom management research.
• To document solutions and best practices for overcoming research implementation barriers.
• To inform future research endeavors in palliative and end-of-life care.

Main Methods:

• A survey was administered to Principal Investigators (PIs) of funded projects in late 2006.
• Survey topics included personnel hiring/retention, Institutional Review Board (IRB) approval, costs, participant accrual, and standard measures.
• Results were validated in 2007 via survey re-administration and follow-up telephone calls; all but one PI participated.

Main Results:

• Primary challenges identified were obtaining IRB approval, hiring/recruiting research personnel, establishing subcontracts, and accruing research subjects.
• Investigators reported unexpected costs and difficulties in retaining study staff.
• The study successfully stimulated research in overcoming barriers to delivering cancer symptom management, palliative care, and end-of-life care.

Conclusions:

• Investigator-identified hurdles and their unique solutions can guide future research planning.
• Addressing implementation challenges is crucial for advancing cancer symptom management and palliative care research.
• The findings provide practical insights for researchers navigating the complexities of clinical trial implementation.