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Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population

Background: The study provides real-world data on the impact of Huntington’s disease (HD) from the perspective of individuals with HD (IHD) and care partners (HD-CP) and contextualizes these results relative to Parkinson’s disease (PD) and the general population (GP). Methods: Cross-sectional survey...

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Autores principales: Exuzides, Alex, Matos, Joana E., Patel, Anisha M., Martin, Ashley A., Ricker, Bryan, Bega, Danny
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8869871/
https://www.ncbi.nlm.nih.gov/pubmed/35203927
http://dx.doi.org/10.3390/brainsci12020161
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author Exuzides, Alex
Matos, Joana E.
Patel, Anisha M.
Martin, Ashley A.
Ricker, Bryan
Bega, Danny
author_facet Exuzides, Alex
Matos, Joana E.
Patel, Anisha M.
Martin, Ashley A.
Ricker, Bryan
Bega, Danny
author_sort Exuzides, Alex
collection PubMed
description Background: The study provides real-world data on the impact of Huntington’s disease (HD) from the perspective of individuals with HD (IHD) and care partners (HD-CP) and contextualizes these results relative to Parkinson’s disease (PD) and the general population (GP). Methods: Cross-sectional survey of IHD and HD-CP in the US (July 2019–August 2019) conducted using the Rare Patient Voice panel. Data for individuals with Parkinson’s Disease (IPD), the general population (GP), and respective care partners (PD-CP; GP-CP) came from the 2018 US National Health and Wellness Survey. Outcomes included demographics, mental health, clinical characteristics, and health-related quality of life (HRQoL). Results: IHD had greater comorbid anxiety (IHD = 51.2%, IPD = 28.8%, GP = 2.0%), and HD-CP had greater comorbid anxiety (HD-CP = 52.5%, PD-CP = 28.6%, GP-CP = 19.6%) and depression (HD-CP = 65.0%, PD-CP = 29.9%, GP-CP = 19.6%), relative to other cohorts (p < 0.05). Respective of their GP cohorts, IHD exhibited lower HRQoL (EQ-5D: 0.66 ± 0.21 vs. 0.81 ± 0.17) and greater depression (PHQ-9: 11.59 ± 7.20 vs. 5.85 ± 6.71), whereas HD-CP exhibited greater depression only (PHQ-9: 6.84 ± 6.38 vs. 4.15 ± 5.58) (p < 0.001). No differences were observed between HD/HD-CP and PD/PD-CP cohorts on PHQ-9 or HRQoL. Conclusions: HD has a significant burden on patients and care partners, which is higher than GP. Notably, anxiety and depression were greater among HD vs. PD, despite similar HRQoL.
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spelling pubmed-88698712022-02-25 Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population Exuzides, Alex Matos, Joana E. Patel, Anisha M. Martin, Ashley A. Ricker, Bryan Bega, Danny Brain Sci Article Background: The study provides real-world data on the impact of Huntington’s disease (HD) from the perspective of individuals with HD (IHD) and care partners (HD-CP) and contextualizes these results relative to Parkinson’s disease (PD) and the general population (GP). Methods: Cross-sectional survey of IHD and HD-CP in the US (July 2019–August 2019) conducted using the Rare Patient Voice panel. Data for individuals with Parkinson’s Disease (IPD), the general population (GP), and respective care partners (PD-CP; GP-CP) came from the 2018 US National Health and Wellness Survey. Outcomes included demographics, mental health, clinical characteristics, and health-related quality of life (HRQoL). Results: IHD had greater comorbid anxiety (IHD = 51.2%, IPD = 28.8%, GP = 2.0%), and HD-CP had greater comorbid anxiety (HD-CP = 52.5%, PD-CP = 28.6%, GP-CP = 19.6%) and depression (HD-CP = 65.0%, PD-CP = 29.9%, GP-CP = 19.6%), relative to other cohorts (p < 0.05). Respective of their GP cohorts, IHD exhibited lower HRQoL (EQ-5D: 0.66 ± 0.21 vs. 0.81 ± 0.17) and greater depression (PHQ-9: 11.59 ± 7.20 vs. 5.85 ± 6.71), whereas HD-CP exhibited greater depression only (PHQ-9: 6.84 ± 6.38 vs. 4.15 ± 5.58) (p < 0.001). No differences were observed between HD/HD-CP and PD/PD-CP cohorts on PHQ-9 or HRQoL. Conclusions: HD has a significant burden on patients and care partners, which is higher than GP. Notably, anxiety and depression were greater among HD vs. PD, despite similar HRQoL. MDPI 2022-01-26 /pmc/articles/PMC8869871/ /pubmed/35203927 http://dx.doi.org/10.3390/brainsci12020161 Text en © 2022 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Exuzides, Alex
Matos, Joana E.
Patel, Anisha M.
Martin, Ashley A.
Ricker, Bryan
Bega, Danny
Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population
title Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population
title_full Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population
title_fullStr Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population
title_full_unstemmed Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population
title_short Understanding the Burdens Associated with Huntington’s Disease in Manifest Patients and Care Partners–Comparing to Parkinson’s Disease and the General Population
title_sort understanding the burdens associated with huntington’s disease in manifest patients and care partners–comparing to parkinson’s disease and the general population
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8869871/
https://www.ncbi.nlm.nih.gov/pubmed/35203927
http://dx.doi.org/10.3390/brainsci12020161
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