Abstract
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 language | English (US) |
|---|---|
| Pages (from-to) | 907-914 |
| Number of pages | 8 |
| Journal | Journal of palliative medicine |
| Volume | 26 |
| Issue number | 7 |
| DOIs | |
| State | Published - Jul 1 2023 |
Funding
Data reported in this article were collected with support from the NIH, National Institute of Neurological Disorders and Stroke (R01NS077946: PI N.E.C.; R01NS0400068: PI J.S.P.), and the National Center for Advancing Translational Sciences (NCATS) (UL1TR000433). J.P.T. was supported, in part, by the NCATS for the Michigan Institute for Clinical and Health Research (UL1TR002240). L.L.S. is supported, in part, extramurally by the Huntington's disease Society of America (HDSA), SP0070054. B.M.K. is supported by the National Institute of Aging (K02 AG062745). L.L.S. receives financial support as a paid consultant from the HD Society of America, American Film Institute, and Tikvah for Parkinson; he has received research support from the Memorial Sloan Kettering MCP NCI R25 Training, and Northwestern Physician Scientist Training program. J.P.T. owns stocks in Procter & Gamble and General Electric and has received research funding through the University of Michigan with Complexa, Inc., Retrophin, Inc., and Goldfinch Bio, and the University of Michigan with Vertex Pharmaceuticals and Pfizer, Inc., D.B. has received personal compensation for consulting, serving on a scientific advisory board, speaking, or other activities with Speaker: Teva Pharmaceuticals, Acorda Therapeutics, Neurocrine Biosciences, Adamas Pharmaceuticals Consulting: Biogen Pharmaceuticals, Amgen Pharmaceuticals, Acadia Pharmaceuticals, Genentech, Inc., GE Healthcare, Gerson Lehrman Group, Guidepoint, and L.E.K.C., and has received personal compensation in an editorial capacity for Editor: Annals of Clinical and Translational Neurology. J.S.P. receives grant support from NIH (NS103475, NS105509, AG074608) and receives compensation for consultation from Wave Life Sciences. B.M.K. received research grant support from the National Institute of Aging, National Institute of Nursing Research, and Patient-Centered Outcomes Research Institute; he has received speaker honoraria from the Parkinson's Foundation. A.J.A. receives funding from the NIH, BlueNote Therapeutics, and the American Cancer Society. S.F. has received personal compensation in the range of $500−$4,999 for serving as a Consultant for uniQure. S.F. has received personal compensation in the range of $500−$4,999 for serving as a Consultant for MCG Health. The institution of S.F. has received research support from HDSA. The institution of S.F. has received research support from Michael J Fox Foundation. The institution of S.F. has received research support from Roche/Genentech. The institution of S.F. has received research support from CHDI Foundation. The institution of S.F. has received research support from Huntington Study Group (HSG). The institution of S.F. has received research support from Triplet Therapeutics. S.F. has received personal compensation in the range of $500−$4,999 for serving as a Consultant for Oscine Therapeutics. M.A.N. has received personal compensation in the range of $5,000−$9,999 for serving as a Consultant for Voyager. M.A.N. has received personal compensation in the range of $500−$4,999 for serving as a Consultant for Roche. M.A.N. has received personal compensation in the range of $5,000−$9,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Roche. M.A.N. has received personal compensation in the range of $500−$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for uniQure. An immediate family member of M.A.N. has received stock or an ownership interest from Fresca. The institution of M.A.N. has received research support from HDSA. The institution of M.A.N. has received research support from Parkinson Foundation. M.A.N. has received research support from Parkinson Foundation. The institution of M.A.N. has received research support from Neuraly. M.A.N. has received personal compensation in the range of $500−$4,999 for serving as a speaker with AAN. K.E.A. received $2,000 payment for her involvement in the Enroll-HD Scientific Oversight Committee. She has also received travel funding to attend Enroll-HD SOC meetings, including where this article was planned and discussed. Through Georgetown University, K.E.A. also receives funding from CHDI as site principal investigator for the Georgetown MedStar Enroll-HD clinical site. J.S.P. has received research funding from the NIH (NS075321, NS103957, NS107281, NS092865, U10NS077384, NS097437, U54NS116025, U19 NS110456, AG050263, AG-64937, NS097799, NS075527, ES029524, NS109487, R61 AT010753 [NCATS, NINDS, NIA], RO1NS118146, R01AG065214), Department of Defense (DOD W81XWH-217-1-0393), Michael J Fox Foundation, Barnes-Jewish Hospital Foundation (Elliot Stein Family Fund and Parkinson disease research fund), American Parkinson Disease Association (APDA) Advanced Research Center at Washington University, Greater St. Louis Chapter of the APDA, Paula and Rodger Riney Fund, Jo Oertli Fund, HD Society of America, Murphy Fund, and CHDI; has received honoraria from CHDI, HD Study Group, Parkinson Study Group, Beth Israel Hospital (Harvard group), University of Pennsylvania, and Stanford University; is co-director for the Dystonia Coalition, which has received the majority of its support through the NIH (grants NS116025, NS065701 from the National Institutes of Neurological Disorders and Stroke and TR 001456 from the Office of Rare Diseases Research at the NCATS); serves as Director of Medical and Scientific Advisory Committee of the Dystonia Medical Research Foundation, Chair of the Scientific Advisory Committee of the Parkinson Study Group, Chair of the Interim Executive Membership Committee of the HSG, Chair of the Nominating Committee of the HSG, Chair of the Standards Committee of the HSG, member of the Scientific Advisory Board of the APDA, Chair of the Scientific and Publication Committee for ENROLL-HD, and member of the Education Committee of the HSG; and has provided medical legal consultation to Wood, Cooper and Peterson, LLC, and Simmons and Simmons LLP. C.A.D. receives support from the NIMH, VA, and NCATS. J.G. receives support from the NIH. D.C. reports consultant fees from AbbVie, Bristol Myers Squibb (BMS), Exelixis, Merck, Novartis, and Pfizer; reports licensing fees from FACIT.org; research grants (institutional) from AbbVie, Astellas, Aveo, BMS, GlaxoSmithKline, Merck, Novartis, and Pfizer; and is an officer of FACIT.org . N.E.C. reports research grants from the NIH, the Neilsen Foundation, and CHDI, as well as a contract from Teva Pharmaceuticals. She is also supported by research funding from the Alzheimer's Association, the Food and Drug Administration (FDA), as well as the Department of Health and Human Services—Centers for Medicare and Medicaid Services. She receives honoraria for her role on the CHDI scientific advisory board and is a consultant on the TBI Congressionally mandated study.
Keywords
- Huntington disease
- death anxiety
- neuropalliative
- quality of life
ASJC Scopus subject areas
- General Nursing
- Anesthesiology and Pain Medicine
