Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is...

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Published inTremor and other hyperkinetic movements (New York, N.Y.) Vol. 7; p. 454
Main Authors Tarolli, Christopher G, Chesire, Amy M, Biglan, Kevin M
Format Journal Article
LanguageEnglish
Published United States Columbia University Libraries/Information Services 01.01.2017
Ubiquity Press
Subjects
Reviews
hospice
advance care planning
palliative care
caregiver burden
Huntington disease
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Abstract Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease. In this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care. We provide a review of the current literature and discuss our own care practices. We conclude by discussing questions that remain unanswered and positing ideas for future work in the field.
AbstractList Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease.BACKGROUNDHuntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease.In this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care.METHODSIn this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care.We provide a review of the current literature and discuss our own care practices.RESULTSWe provide a review of the current literature and discuss our own care practices.We conclude by discussing questions that remain unanswered and positing ideas for future work in the field.DISCUSSIONWe conclude by discussing questions that remain unanswered and positing ideas for future work in the field.
Background Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease.Methods In this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care.Results We provide a review of the current literature and discuss our own care practices.Discussion We conclude by discussing questions that remain unanswered and positing ideas for future work in the field.
Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease. In this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care. We provide a review of the current literature and discuss our own care practices. We conclude by discussing questions that remain unanswered and positing ideas for future work in the field.
Author Chesire, Amy M
Tarolli, Christopher G
Biglan, Kevin M
AuthorAffiliation 2 Early Phase Clinical Development, Neurosciences, Eli Lilly and Company, Indianapolis, IN, USA
Yale University, USA
1 Department of Neurology, University of Rochester, Rochester, NY, USA
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Keywords hospice
advance care planning
palliative care
caregiver burden
Huntington disease
Language English
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PublicationTitle Tremor and other hyperkinetic movements (New York, N.Y.)
PublicationTitleAlternate Tremor Other Hyperkinet Mov (N Y)
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Snippet Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and...
Background Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances,...
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Title Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature
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