Downing Nancy R, Goodnight Siera, Chae Sena, Perlmutter Joel S, McCormack Michael, Hahn Elizabeth, Barton Stacey K, Carlozzi Noelle
1 Texas A&M College of Nursing, Bryan, TX, USA.
2 University of Michigan, Department of Physical Medicine & Rehabilitation, Ann Arbor, MI, USA.
Am J Hosp Palliat Care. 2018 Mar;35(3):440-447. doi: 10.1177/1049909117708195. Epub 2017 Jun 28.
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.
了解自身成年发病疾病的基因状况为制定提前的临终（EOL）计划提供了机会。这些分析的目的是：（1）确定临终计划的患病率，包括亨廷顿舞蹈症（HD）三个阶段人群中的预立医嘱（ADs）；（2）在该样本中检查与拥有预立医嘱相关的因素。
数据来自HD生活质量研究中的503名参与者。参与者完成了一项在线健康相关生活质量调查，其中包括有关临终计划和自我报告的HD症状的问题。按HD阶段计算临终计划的频率。采用双变量分析和逻辑回归来确定与拥有预立医嘱相关的变量。
共有38.2%的参与者表示他们有预立医嘱，不到一半的人有其他临终计划。年龄较大、HD阶段增加、受教育年限更多、焦虑程度较低、吞咽症状更多以及意义和目标更高与拥有预立医嘱相关。
我们样本中预立医嘱的患病率与美国普通人群相当，但考虑到HD的严重性和漫长病程，这一患病率低得出奇。
医疗保健提供者应在疾病过程早期制定具体干预措施，以增加该人群中的预立医嘱。
