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Objective: With Huntington disease (HD), a fatal neurodegenerative disease where the prevalence of suicidal thoughts and behavior (STB) remains elevated as compared to other neurological disorders, it is unknown whether STB and health-related quality of life (HRQoL) affect plans for the end of life or more broadly, advance care planning (ACP). Conversely, it is unknown whether ACP would provoke future changes to STB and HRQoL. Therefore, we sought to evaluate whether STB and HRQoL patient-reported outcomes (PROs) contribute to ACP and whether ACP relates to changes in STB and HRQoL at 24 months. Methods: HD-validated clinician- and patient-assessments (i.e., HRQoL PROs) were obtained at baseline enrollment, 12 and 24 months through our multi-center study (HDQLIFE?) throughout the United States among people with premanifest, early-stage, and late-stage manifest HD. We used linear mixed-effects models to determine the relationships between STB and HRQoL at baseline and HDQLIFE End of Life Planning at follow-up. Separate linear mixed-effects models were used to assess the relationship between HDQLIFE End of Life Planning at baseline, and HRQoL and STB at 12 and 24 months. False discovery rate adjustments were used to account for multiple comparisons. Results: At baseline enrollment, STB and HRQoL were not related to HDQLIFE End of Life Planning at 12 or 24 months. Similarly, at baseline, HDQLIFE End of Life Planning demonstrated no association with STB or HRQoL at 12 or 24 months. Interpretation: STB and HRQoL PROs do not significantly affect patient engagement with ACP. Most importantly, engaging in ACP does not cause untoward effects on HRQoL or STB for this rare neurodegenerative disease where the lifetime prevalence of STB approaches 30%.

Importance: 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., Observations: 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., Conclusions and Relevance: 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.