Research priorities in neuropalliative care-A consensus statement from the International Neuropalliative Care Society

Research priorities in neuropalliative care-A consensus statement from the International Neuropalliative Care Society
JAMA Neurology; Winnie K. Lau, MD; Corey R. Fehnel, MD, MPH; Zachary A. Macchi, MD; Ambereen K. Mehta, MD, MPH; Manon Auffret, PharmD, PhD; Jori F. Bogetz, MD; Jori E. Fleisher, MD, MSCE; Jerome J. Graber, MD, MPH; Heather E. Leeper, MD, MS; Heena R. Manglani-Terranova, PhD; Susanne Muehlschlegel, MD, MPH; Emily L. Mroz, PhD; Elizabeth J. Pedowitz, MD; Usha Ramanathan, MSc, MD; Max Sarmet, SLP, MSc; Nathan A. Shlobin, BA; Leonard Sokol, MD; Susan Allyson Weeks, MA; Jiayun Xu, PhD, RN; Helen Bundy Medsger; Claire J. Creutzfeldt, MD; Ana-Maria Vranceanu, PhD; Darin B. Zahuranec, MD, MS; David Y. Hwang, MD; 2/25
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.