ArticleJournal of neurology2014
Thinking about the end of life: a common issue for patients with Huntington's disease.
Article in Journal of neurology, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers, 1 of them a synthesis that pooled it.
What it found
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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
14 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The involvement of family in the Dutch practice of euthanasia and physician assisted suicide: a systematic mixed studies review.BMC medical ethics · 2019Pooled it
- Risk Factors and Interventions for Suicide in Huntington's Disease-A Systematic Review.Journal of clinical medicine · 2024Review
- 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
- Layers of Loss: A Scoping Review and Taxonomy of HD Caregivers' Spiritual Suffering, Grief/Loss and Coping Strategies.Journal of pain and symptom management · 2023Article
- Advance Care Planning and Health-Related Quality of Life in Huntington Disease: Results from a Multicenter National Study.Palliative medicine reports · 2023Article
- Hospice Care Experiences Among Decedents With Huntington's Disease.Journal of pain and symptom management · 2022Article
- Advance Directive Documentation in a Huntington's Disease Clinic: A Retrospective Chart Review.Tremor and other hyperkinetic movements (New York, N.Y.) · 2022Article
- An Australian Neuro-Palliative perspective on Huntington's disease: a case report.BMC palliative care · 2021Article
- 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
- End-of-life measures in Huntington disease: HDQLIFE Meaning and Purpose, Concern with Death and Dying, and End of Life Planning.Journal of neurology · 2019Article
- Factors Associated With End-of-Life Planning in Huntington Disease.The American journal of hospice & palliative care · 2018Article
- A new measure for end of life planning, preparation, and preferences in Huntington disease: HDQLIFE end of life planning.Journal of neurology · 2018Article
- New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system).Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2016Article
Corrections and comments
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
The aim of this study was to investigate the presence of thoughts or wishes for the end of life in patients with Huntington's disease (HD) or identified gene carriers (further mentioned together as patients). A custom-made questionnaire, based on previous qualitative research, was sent out to 242 patients with HD and identified gene carriers. Presence of wishes was investigated and correlated to demographic and clinical characteristics. A total of 134 patients (55 %) returned the questionnaire. 101 respondents (75 %) reported to have some kind of thoughts or wishes for the end of life. For 15 respondents (11 %) these thoughts concerned care; 86 respondents (64 %) reported to have also thoughts about euthanasia or physician-assisted suicide (PAS). The presence of any thoughts about the end of life was significantly related to being familiar with HD in the family, but not related to any other demographic or clinical variable. Participants with thoughts specifically about euthanasia or PAS were of higher education and in earlier stages of the disease than participants without such thoughts. Thoughts or wishes for the end of life are present amongst patients with HD. These thoughts include euthanasia or PAS in a majority of the respondents. It is suggested that prudential addressing of these issues may enhance the doctor-patient relationship.
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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.