Factors Associated With End-of-Life Planning in Huntington Disease

Nancy R. Downing*, Siera Goodnight, Sena Chae, Joel S. Perlmutter, Michael McCormack, Elizabeth A Hahn, Stacey K. Barton, Noelle Carlozzi

*Corresponding author for this work

Research output: Contribution to journalArticle

Abstract

Objective: Knowledge of one’s gene status for adult onset conditions provides opportunity to make advance end-of-life (EOL) plans. The purposes of these analyses were to (1) determine the prevalence of EOL plans, including advance directives (ADs) among persons across 3 stages of Huntington disease (HD) and (2) examine factors associated with having ADs in this sample. Methods: Data are from 503 participants in the HD Quality of Life study. Participants completed an online health-related quality-of-life survey that included questions regarding EOL planning and self-reported HD symptoms. Frequencies were calculated for EOL planning by the HD stage. Bivariate analysis and logistic regression were used to identify variables associated with having ADs. Results: A total of 38.2% of participants stated they had ADs and fewer than half had other EOL plans. Being older, increased HD stage, more years of education, lower anxiety, more swallowing symptoms, and higher meaning and purpose were associated with having ADs. Conclusion: The prevalence of ADs in our sample is comparable to the general US population, but surprisingly low, considering the severity and long disease course of HD. Practice Implications: Health-care providers should develop specific interventions early in the disease process to increase ADs in this population.

Original languageEnglish (US)
Pages (from-to)440-447
Number of pages8
JournalAmerican Journal of Hospice and Palliative Medicine
Volume35
Issue number3
DOIs
StatePublished - Mar 1 2018

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Advance Directives
Huntington Disease
Quality of Life
Deglutition
Health Personnel
Population
Anxiety
Logistic Models
Education

Keywords

  • Huntington disease
  • adult onset conditions
  • advance directives
  • palliative care

ASJC Scopus subject areas

  • Medicine(all)

Cite this

Downing, N. R., Goodnight, S., Chae, S., Perlmutter, J. S., McCormack, M., Hahn, E. A., ... Carlozzi, N. (2018). Factors Associated With End-of-Life Planning in Huntington Disease. American Journal of Hospice and Palliative Medicine, 35(3), 440-447. https://doi.org/10.1177/1049909117708195
Downing, Nancy R. ; Goodnight, Siera ; Chae, Sena ; Perlmutter, Joel S. ; McCormack, Michael ; Hahn, Elizabeth A ; Barton, Stacey K. ; Carlozzi, Noelle. / Factors Associated With End-of-Life Planning in Huntington Disease. In: American Journal of Hospice and Palliative Medicine. 2018 ; Vol. 35, No. 3. pp. 440-447.
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Downing, NR, Goodnight, S, Chae, S, Perlmutter, JS, McCormack, M, Hahn, EA, Barton, SK & Carlozzi, N 2018, 'Factors Associated With End-of-Life Planning in Huntington Disease', American Journal of Hospice and Palliative Medicine, vol. 35, no. 3, pp. 440-447. https://doi.org/10.1177/1049909117708195

Factors Associated With End-of-Life Planning in Huntington Disease. / Downing, Nancy R.; Goodnight, Siera; Chae, Sena; Perlmutter, Joel S.; McCormack, Michael; Hahn, Elizabeth A; Barton, Stacey K.; Carlozzi, Noelle.

In: American Journal of Hospice and Palliative Medicine, Vol. 35, No. 3, 01.03.2018, p. 440-447.

Research output: Contribution to journalArticle

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