Research Priorities in Neuropalliative Care: A Consensus Statement From the International Neuropalliative Care Society.

Abstract

The integration of palliative care in neurology, or neuropalliative care, is an emerging area of practice focused on holistically improving quality of life and reducing the burden of suffering for people living with serious neurologic disease and their care partners. Major neurology and palliative care societies have recognized the need to advance primary and specialty palliative care services for people with neurologic disease. However, research to support this work is in its early stages. The International Neuropalliative Care Society Research Committee convened an interdisciplinary panel of experts, including clinicians, scientists, people with neurologic disease, and care partners, to identify priority research areas for the advancement of neuropalliative care as a field. Three priority areas highlighted in this review include (1) patient- and care partner-centered symptoms and outcomes specific to neurologic illness and tools for their assessment, (2) development of effective neuropalliative care interventions and delivery models, and (3) methods to support the ability to foster, deliver, and measure goal-concordant care over time. This Special Communication outlines some of the most pressing neuropalliative care research needs, the advancement of which will best serve patients of all ages living with serious neurologic diseases and their care partners. Research funding mechanisms are needed to support and sustain impactful work in this field.