Proceedings of the First Neuropalliative Care Research Summit (NeuroCARES).

Abstract

Neuropalliative care is a rapidly evolving field of healthcare that is essential for addressing the complex needs of individuals with serious neurological disorders and their care partners. Effectively addressing these needs will require advances in Neuropalliative care research designed to improve the quality of life for all people affected by neurological disorders and their care-partners. On April 12, 2024, the first Neuropalliative Care Research Summit (NeuroCARES), funded by the National Institute of Neurological Disorders and Stroke (NINDS) and supported by the International Neuropalliative Care Society (INPCS), provided an opportunity for clinicians, researchers, representatives from NIH and patient and family advocates to come together to identify and discuss neuropalliative care research challenges and opportunities. The summit hosted 80 transdisciplinary researchers and clinicians from 47 institutions, including 25 virtual attendees. The conference featured three roundtable discussions, six scientific sessions, and two junior investigator mentoring workshops. Research priorities identified included: 1) developing strategies to address healthcare inequities; 2) increasing methodological rigor concerning data collection and intervention development; 3) increasing care partner involvement through initiatives such as Community Advisory Boards to ensure that research aligns with real-world needs; 4) utilizing big data to examine differences in neuropalliative care delivery across the U.S. healthcare system; 5) developing standardized metrics including common data elements and tailoring them to neuropalliative care; and 6) creating enhanced training, mentoring, and funding opportunities for early career neuropalliative care investigators. This article summarizes key takeaways and deliverables from the summit while emphasizing the need for a biopsychosocial approach to neuropalliative care.