Format

Send to

Choose Destination
Am J Hosp Palliat Care. 2018 Mar;35(3):440-447. doi: 10.1177/1049909117708195. Epub 2017 Jun 28.

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

Author information

1
1 Texas A&M College of Nursing, Bryan, TX, USA.
2
2 University of Michigan, Department of Physical Medicine & Rehabilitation, Ann Arbor, MI, USA.
3
3 University of Iowa College of Nursing, Iowa City, IA, USA.
4
4 HDSA Center of Excellence, Washington University at St Louis School of Medicine, St Louis, MO, USA.
5
5 Department of Pathology, Rowan SOM, Piscataway, NJ, USA.
6
6 Department of Psychiatry, Rutgers-RWJMS, Piscataway, NJ, USA.
7
7 Northwestern University Feinberg School of Medicine, Chicago, IL, USA.

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.

KEYWORDS:

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

PMID:
28655280
PMCID:
PMC6074046
[Available on 2019-03-01]
DOI:
10.1177/1049909117708195
[Indexed for MEDLINE]

Supplemental Content

Full text links

Icon for Atypon
Loading ...
Support Center