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Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease

Background: Chorea is recognized as a prototypic motor feature of Huntington’s disease (HD), but its effect on health-related quality of life (HRQoL) has not been fully explored. This study describes the impact of chorea on HRQoL in patients with HD. Objective: To determine the impact of HD-related...

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Autores principales: Claassen, Daniel O., DeCourcy, Jonathan, Mellor, Jennifer, Johnston, Charlotte, Iyer, Ravi G.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Columbia Data Analytics, LLC 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8216765/
https://www.ncbi.nlm.nih.gov/pubmed/34183975
http://dx.doi.org/10.36469/001c.24620
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author Claassen, Daniel O.
DeCourcy, Jonathan
Mellor, Jennifer
Johnston, Charlotte
Iyer, Ravi G.
author_facet Claassen, Daniel O.
DeCourcy, Jonathan
Mellor, Jennifer
Johnston, Charlotte
Iyer, Ravi G.
author_sort Claassen, Daniel O.
collection PubMed
description Background: Chorea is recognized as a prototypic motor feature of Huntington’s disease (HD), but its effect on health-related quality of life (HRQoL) has not been fully explored. This study describes the impact of chorea on HRQoL in patients with HD. Objective: To determine the impact of HD-related chorea on employment, self-care activities, activities of daily living, and health-care resource utilization (HCRU). Methods: Data were drawn from the Adelphi HD Disease Specific Programme, a real-world point-in-time survey of 144 neurologists and 427 patients in the United States between July and October 2017. HD patients with and without chorea were identified and examined for differences in employment status, reasons for employment changes, self-care activities, and modifications to cope with involuntary movements. Bivariate tests and inverse probability weighted regression adjustment methods were used to determine differences in outcomes between patients with and without chorea. Results: HD patients with (n=287) and without (n=140) chorea were identified. Patients with chorea were less likely to be employed full-time (16.7% vs 25.7%; P<0.04) and more likely to be on long-term sick leave (17.4% vs 5.0%; P<0.01). The onset of motor symptoms in HD-related chorea patients coincided with a change in employment status (42.7% vs 20.8%; P<0.01). Among those still working (n=145), more than two-fifths of patients with chorea required changes to their workplace and required these changes more frequently (45% vs 17%; P<0.001). HD patients with chorea required aid to help them get around significantly more frequently than those without chorea (55% vs 34%; P<0.001). Discussion: These results demonstrate that HD patients with chorea experienced greater negative impact to employment, self-care activities, and HCRU than patients without chorea experienced. These patients were more likely to stop working due to motor, cognitive, and behavioral symptoms; require modifications in the home and workplace; and need more assistance from caregivers than patients without chorea. Conclusions: Patients with HD-related chorea have greater detriments to emotional, interpersonal, and professional functioning that could be improved by reducing chorea.
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spelling pubmed-82167652021-06-27 Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease Claassen, Daniel O. DeCourcy, Jonathan Mellor, Jennifer Johnston, Charlotte Iyer, Ravi G. J Health Econ Outcomes Res Neurological Diseases Background: Chorea is recognized as a prototypic motor feature of Huntington’s disease (HD), but its effect on health-related quality of life (HRQoL) has not been fully explored. This study describes the impact of chorea on HRQoL in patients with HD. Objective: To determine the impact of HD-related chorea on employment, self-care activities, activities of daily living, and health-care resource utilization (HCRU). Methods: Data were drawn from the Adelphi HD Disease Specific Programme, a real-world point-in-time survey of 144 neurologists and 427 patients in the United States between July and October 2017. HD patients with and without chorea were identified and examined for differences in employment status, reasons for employment changes, self-care activities, and modifications to cope with involuntary movements. Bivariate tests and inverse probability weighted regression adjustment methods were used to determine differences in outcomes between patients with and without chorea. Results: HD patients with (n=287) and without (n=140) chorea were identified. Patients with chorea were less likely to be employed full-time (16.7% vs 25.7%; P<0.04) and more likely to be on long-term sick leave (17.4% vs 5.0%; P<0.01). The onset of motor symptoms in HD-related chorea patients coincided with a change in employment status (42.7% vs 20.8%; P<0.01). Among those still working (n=145), more than two-fifths of patients with chorea required changes to their workplace and required these changes more frequently (45% vs 17%; P<0.001). HD patients with chorea required aid to help them get around significantly more frequently than those without chorea (55% vs 34%; P<0.001). Discussion: These results demonstrate that HD patients with chorea experienced greater negative impact to employment, self-care activities, and HCRU than patients without chorea experienced. These patients were more likely to stop working due to motor, cognitive, and behavioral symptoms; require modifications in the home and workplace; and need more assistance from caregivers than patients without chorea. Conclusions: Patients with HD-related chorea have greater detriments to emotional, interpersonal, and professional functioning that could be improved by reducing chorea. Columbia Data Analytics, LLC 2021-06-21 /pmc/articles/PMC8216765/ /pubmed/34183975 http://dx.doi.org/10.36469/001c.24620 Text en https://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (4.0) (https://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Neurological Diseases
Claassen, Daniel O.
DeCourcy, Jonathan
Mellor, Jennifer
Johnston, Charlotte
Iyer, Ravi G.
Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease
title Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease
title_full Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease
title_fullStr Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease
title_full_unstemmed Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease
title_short Impact of Chorea on Self-care Activity, Employment, and Health-care Resource Use in Patients with Huntington’s Disease
title_sort impact of chorea on self-care activity, employment, and health-care resource use in patients with huntington’s disease
topic Neurological Diseases
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8216765/
https://www.ncbi.nlm.nih.gov/pubmed/34183975
http://dx.doi.org/10.36469/001c.24620
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