Factors Associated With the Place of Death in Huntington Disease: Analysis of Enroll-HD

Leonard L. Sokol; Martha Nance; Benzi M. Kluger; Chen Yeh; Jane S. Paulsen; Alexander K. Smith; Danny Bega

doi:10.1089/jpm.2022.0143

Factors Associated With the Place of Death in Huntington Disease: Analysis of Enroll-HD

Leonard L. Sokol^*, Martha Nance, Benzi M. Kluger, Chen Yeh, Jane S. Paulsen, Alexander K. Smith, Danny Bega

^*Corresponding author for this work

Neurology

Research output: Contribution to journal › Article › peer-review

Abstract

Background: Most people prefer to die at home. Hospice is the standard in end-of-life care for people with Huntington disease (HD), a neurodegenerative genetic disorder that affects people in middle adulthood. Yet, we have little knowledge regarding the place of death for people with HD. Therefore, the current state of knowledge limits HD clinicians' ability to conduct high-quality goals of care conversations. Objectives: We sought to determine the factors associated with the place of death in people with HD. Design: We obtained cross-sectional data from Enroll-HD and included participants with a positive HD mutation of 36 or more CAG repeats. Results: Out of 16,120 participants in the Enroll-HD study, 536 were reported as deceased. The mean age at death was 60. The leading place of death was home (29%), followed by the hospital (23%). The adjusted odds ratio (aOR) of dying at a skilled nursing facility was significantly lower for those partnered (aOR: 0.48, confidence interval [95% CI]: 0.26-0.86). The aOR for dying on hospice compared to home was increased in a person with some college and above (aOR: 2.40, 95% CI: 1.21-4.75). Conclusions: Our data further suggest that models that predict the place of death for serious illnesses do not appear to generalize to HD. The distribution in the places of death within HD was not uniform. Our findings may assist HD clinicians in communication during goals of care conversations.

Original language	English (US)
Pages (from-to)	915-921
Number of pages	7
Journal	Journal of palliative medicine
Volume	26
Issue number	7
DOIs	https://doi.org/10.1089/jpm.2022.0143
State	Published - Jul 1 2023

Funding

L.L.S. is supported, in part, by the Huntington's disease Society of America (HDSA), SP0070054. A.K.S. was supported by the NIH (K24AG068312). B.M.K. was supported by the NIH (K02AG062745). L.L.S. in the past 12 months receives or has received research, honoraria, or consulting support from UT Houston McGovern, Tikvah for Parkinson, the American Film Institute, Starzl PSTP Program in Neurology, the MSK R25 NCI 2R25CA190169, and the HDSA COE 2021-2022 SP0070054. M.N. has received personal compensation in the range of $5,000–$9,999 for serving as a Consultant for Voyager. M.N. has received personal compensation in the range of $500–$4,999 for serving as a consultant for Roche. M.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.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.N. has received stock or an ownership interest from Fresca. The institution of M.N. has received research support from HDSA. The institution of M.N. has received research support from Parkinson Foundation. M.N. has received research support from Parkinson Foundation. The institution of M.N. has received research support from Neuraly. M.N. has received personal compensation in the range of $500–$4,999 for serving as a speaker with AAN. 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. C.Y. has no relevant financial or nonfinancial disclosure. J.S.P. receives grant support from NIH (NS103475, NS105509, and AG074608) and receives compensation for consultation from Wave Life Sciences. A.K.S. receives grant support from the National Institutes on Aging (K24AG068312; T32AG000212; and R01AG057751). 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., G.E. Health care, Gerson Lehrman Group, Guidepoint, L.E.K. C., and has received personal compensation in an editorial capacity for Editor: Annals of Clinical & Translational Neurology.

Keywords

Huntington disease
end of life
place of death

ASJC Scopus subject areas

General Nursing
Anesthesiology and Pain Medicine

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10.1089/jpm.2022.0143

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abstract = "Background: Most people prefer to die at home. Hospice is the standard in end-of-life care for people with Huntington disease (HD), a neurodegenerative genetic disorder that affects people in middle adulthood. Yet, we have little knowledge regarding the place of death for people with HD. Therefore, the current state of knowledge limits HD clinicians' ability to conduct high-quality goals of care conversations. Objectives: We sought to determine the factors associated with the place of death in people with HD. Design: We obtained cross-sectional data from Enroll-HD and included participants with a positive HD mutation of 36 or more CAG repeats. Results: Out of 16,120 participants in the Enroll-HD study, 536 were reported as deceased. The mean age at death was 60. The leading place of death was home (29%), followed by the hospital (23%). The adjusted odds ratio (aOR) of dying at a skilled nursing facility was significantly lower for those partnered (aOR: 0.48, confidence interval [95% CI]: 0.26-0.86). The aOR for dying on hospice compared to home was increased in a person with some college and above (aOR: 2.40, 95% CI: 1.21-4.75). Conclusions: Our data further suggest that models that predict the place of death for serious illnesses do not appear to generalize to HD. The distribution in the places of death within HD was not uniform. Our findings may assist HD clinicians in communication during goals of care conversations.",

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Factors Associated With the Place of Death in Huntington Disease: Analysis of Enroll-HD

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