Factors Associated With End-of-Life Planning in Huntington Disease.
Nancy R Downing, Siera Goodnight, Sena Chae and 5 others
PMID 28655280WHAT IT FOUND
Only 38.2% of 503 people with Huntington disease had advance directives.
Older age, late-stage disease, and more education were linked to having them; prodromal participants, despite genetic testing, were least likely.
Key findings
0138.2% of the 503 participants analysed reported having an advance directive.
02Participants in late-stage HD were more likely to have an advance directive than those in prodromal or early-stage HD.
03In the logistic model, late-stage participants had almost three times higher odds of having an advance directive than prodromal participants; each year of age and each year of education also increased odds.
STILL TO COME
How it was doneWhat they foundWhat it means for RNs
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What it does not show
The study was a survey and was not designed to test whether any clinician discussion increased advance directives. The analysis included 503 of 505 participants because HD stage was missing for 2 people. The survey did not define advance directive, living will, health care power of attorney, palliative care, or other end-of-life terms, and participants could skip items without an option to say they did not understand. The sample was 96% White and 93.7% not Hispanic, and many participants were recruited from Huntington disease centers, research studies, newsletters, or websites, so it may not represent people with Huntington disease outside specialty care or research. The sample included more prodromal and early-stage participants than late-stage participants, partly because cognitive decline in late stages could limit informed consent. Family members may have answered items on behalf of participants, despite instructions that responses should come directly from participants. Some factors known to affect advance directives, including literacy, knowledge, self-efficacy, religiosity, and illness-related fear, were not measured.
The easy way to misread this
Do not conclude that advance directives are only worth discussing in late-stage Huntington disease. This was a survey, not a test of any clinician conversation, and participants in the earliest stage may still make plans later.