ArticleThe American journal of hospice & palliative care2018
Factors Associated With End-of-Life Planning in Huntington Disease.
Article in The American journal of hospice & palliative care, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
9 citing papers in PubMed, 22 citations in OpenAlex.
- Palliative care in advanced Huntington's disease: a scoping review.BMC palliative care · 2023Article
- Primary Palliative Care in Huntington's Disease.Movement disorders clinical practice · 2023Article
- Advance Care Planning and Health-Related Quality of Life in Huntington Disease: Results from a Multicenter National Study.Palliative medicine reports · 2023Article
- Disparities in Palliative Care Utilization Among Hospitalized People With Huntington Disease: A National Cross-Sectional Study.The American journal of hospice & palliative care · 2022Article
- Advance Directive Documentation in a Huntington's Disease Clinic: A Retrospective Chart Review.Tremor and other hyperkinetic movements (New York, N.Y.) · 2022Article
- Meaning and purpose in Huntington's disease: a longitudinal study of its impact on quality of life.Annals of clinical and translational neurology · 2021Article
- An Australian Neuro-Palliative perspective on Huntington's disease: a case report.BMC palliative care · 2021Article
- Palliative Care in Movement Disorders: an Evolving Field.Current neurology and neuroscience reports · 2021Review
- Gaining insight into the views of outpatients with Huntington's disease regarding their future and the way they deal with their poor prognosis: a qualitative study.BMC palliative care · 2021Article
Corrections and comments
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Authors and funding
8 authors at 6 institutions in 1 country.
Funding
Abstract
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 IMPLICATIONS: Health-care providers should develop specific interventions early in the disease process to increase ADs in this population.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.