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An Australian Neuro-Palliative perspective on Huntington's disease: a case report

BACKGROUND: Huntington’s Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Australia. We discuss the experiences of and benefits to a patient with late-stage...

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Autores principales: Shah, Rajvi, Lee, Sarah CM, Strasser, Rupert B, Grossman, Christopher
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8017854/
https://www.ncbi.nlm.nih.gov/pubmed/33794853
http://dx.doi.org/10.1186/s12904-021-00744-z
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author Shah, Rajvi
Lee, Sarah CM
Strasser, Rupert B
Grossman, Christopher
author_facet Shah, Rajvi
Lee, Sarah CM
Strasser, Rupert B
Grossman, Christopher
author_sort Shah, Rajvi
collection PubMed
description BACKGROUND: Huntington’s Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Australia. We discuss the experiences of and benefits to a patient with late-stage HD admitted to our Neuro-Palliative Care service. CASE PRESENTATION: We present the case of a patient with a 16-year history of HD from time of initial genetic testing to admission to our Neuro-Palliative Care service with late-stage disease. CONCLUSIONS: Given the prolonged, fluctuating and heterogenous HD trajectory, measures need to be implemented to improve earlier access to multi-specialty integrative palliative care services. Given the good outcomes of our case, we strongly advocate for the role of specialised Neuro-Palliative Care services to bridge the gap between clinical need and accessibility.
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spelling pubmed-80178542021-04-05 An Australian Neuro-Palliative perspective on Huntington's disease: a case report Shah, Rajvi Lee, Sarah CM Strasser, Rupert B Grossman, Christopher BMC Palliat Care Case Report BACKGROUND: Huntington’s Disease (HD) is an incurable, progressive neuro-degenerative disease. For patients with HD access to palliative care services is limited, with dedicated Neuro-Palliative Care Services rare in Australia. We discuss the experiences of and benefits to a patient with late-stage HD admitted to our Neuro-Palliative Care service. CASE PRESENTATION: We present the case of a patient with a 16-year history of HD from time of initial genetic testing to admission to our Neuro-Palliative Care service with late-stage disease. CONCLUSIONS: Given the prolonged, fluctuating and heterogenous HD trajectory, measures need to be implemented to improve earlier access to multi-specialty integrative palliative care services. Given the good outcomes of our case, we strongly advocate for the role of specialised Neuro-Palliative Care services to bridge the gap between clinical need and accessibility. BioMed Central 2021-04-01 /pmc/articles/PMC8017854/ /pubmed/33794853 http://dx.doi.org/10.1186/s12904-021-00744-z Text en © The Author(s) 2021 Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Case Report
Shah, Rajvi
Lee, Sarah CM
Strasser, Rupert B
Grossman, Christopher
An Australian Neuro-Palliative perspective on Huntington's disease: a case report
title An Australian Neuro-Palliative perspective on Huntington's disease: a case report
title_full An Australian Neuro-Palliative perspective on Huntington's disease: a case report
title_fullStr An Australian Neuro-Palliative perspective on Huntington's disease: a case report
title_full_unstemmed An Australian Neuro-Palliative perspective on Huntington's disease: a case report
title_short An Australian Neuro-Palliative perspective on Huntington's disease: a case report
title_sort australian neuro-palliative perspective on huntington's disease: a case report
topic Case Report
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8017854/
https://www.ncbi.nlm.nih.gov/pubmed/33794853
http://dx.doi.org/10.1186/s12904-021-00744-z
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