Death Anxiety in Huntington Disease: Longitudinal Heath-Related Quality-of-Life Outcomes

Leonard L. Sokol, Jonathan P. Troost, Danny Bega, Jane S. Paulsen, Benzi M. Kluger, Allison J. Applebaum, Samuel Frank, Martha A. Nance, Karen E. Anderson, Joel S. Perlmutter, Colin A. Depp, Jordan Grafman, David Cella, Noelle E. Carlozzi

Research output: Contribution to journalArticlepeer-review

3 Scopus citations


Objective: Death anxiety, represented by the HDQLIFE™ Concern with Death and Dying (CwDD) patient-reported outcome (PRO) questionnaire, captures a person's worry about the death and dying process. Previous work suggests that death anxiety remains an unremitting burden throughout all stages of Huntington disease (HD). Although palliative interventions have lessened death anxiety among people with advanced cancer, none has yet to undergo testing in the HD population. An account of how death anxiety is associated with longitudinal changes to aspects of health-related quality of life (HRQoL) would help optimize neuropalliative interventions for people with HD. Methods: HDQLIFE collected PROs concerning physical, mental, social, and cognitive HRQoL domains and clinician-rated assessments from people with HD at baseline and 12 and 24 months. Linear mixed-effects models were created to determine how baseline death anxiety was associated with follow-up changes in HRQoL PROs after controlling for baseline death anxiety and other disease and sociodemographic covariates. Results: Higher baseline HDQLIFE CwDD is associated with 12- and 24-month declines in HDQLIFE Speech Difficulties, neurology quality of life (NeuroQoL) Depression, Suicidality, HDQLIFE Meaning and Purpose, and NeuroQoL Positive Affect and Well-being. Interpretation: Death anxiety may be a risk factor for worsening mental health and speech difficulty. A further prospective study is required to evaluate whether interventions on death anxiety or mental health generally can reduce declines in HRQoL for people with HD over time.

Original languageEnglish
Pages (from-to)907-914
Number of pages8
JournalJournal of palliative medicine
Issue number7
StatePublished - Jul 1 2023


  • Huntington disease
  • death anxiety
  • neuropalliative
  • quality of life


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