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

Nancy R Downing; Siera Goodnight; Sena Chae; Joel S Perlmutter; Michael McCormack; Elizabeth Hahn; Stacey K Barton; Noelle Carlozzi

doi:10.1177/1049909117708195

Back

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

Journal article

Open access

Peer reviewed

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

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

American journal of hospice & palliative medicine, Vol.35(3), pp.440-447

03/2018

DOI: 10.1177/1049909117708195

PMCID: PMC6074046

PMID: 28655280

Files and links (1)

url

https://rdw.rowan.edu/som_facpub/139View

Open Access

Abstract

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. 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. 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. 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. Health-care providers should develop specific interventions early in the disease process to increase ADs in this population.

Adolescent

Adult

Advance Care Planning - organization & administration

Advance Directives

Aged

Aged, 80 and over

Female

Humans

Huntington Disease - epidemiology

Male

Middle Aged

Severity of Illness Index

Socioeconomic Factors

Terminal Care - organization & administration

Young Adult

Details

Title: Subtitle: Factors Associated With End-of-Life Planning in Huntington Disease
Creators: Nancy R Downing - Texas A&M University
Siera Goodnight - University of Michigan
Sena Chae - University of Iowa
Joel S Perlmutter - Washington University in St. Louis
Michael McCormack - Rutgers, The State University of New Jersey
Elizabeth Hahn - Northwestern University
Stacey K Barton - Washington University in St. Louis
Noelle Carlozzi - University of Michigan
Resource Type: Journal article
Publication Details: American journal of hospice & palliative medicine, Vol.35(3), pp.440-447
DOI: 10.1177/1049909117708195
PMID: 28655280
PMCID: PMC6074046
NLM abbreviation: Am J Hosp Palliat Care
ISSN: 1049-9091
eISSN: 1938-2715
Grant note: R01 NS040068 / NINDS NIH HHS R01 NS077946 / NINDS NIH HHS UL1 TR002240 / NCATS NIH HHS UL1 TR000433 / NCATS NIH HHS R03 NS065194 / NINDS NIH HHS
Language: English
Date published: 03/2018
Academic Unit: Nursing
Record Identifier: 9984368097602771

Metrics

8 Record Views

18 Times Cited - Web of Science

See more details