• Nancy R Downing, Siera Goodnight, Sena Chae, Joel S Perlmutter, Michael McCormack, Elizabeth Hahn, Stacey K Barton, and Noelle Carlozzi.
• 1 Texas A&M College of Nursing, Bryan, TX, USA.
• Am J Hosp Palliat Care. 2018 Mar 1; 35 (3): 440-447.

ObjectiveKnowledge 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.MethodsData 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.ResultsA 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.ConclusionThe 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 ImplicationsHealth-care providers should develop specific interventions early in the disease process to increase ADs in this population.

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