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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...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
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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. |
format | Online Article Text |
id | pubmed-8017854 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
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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