Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington’s disease gene expansion carriers

Shifting focus from ideality to reality: a qualitative study on how quality of life is defined by premanifest and manifest Huntington’s disease gene expansion carriers

Abstract Background Understanding quality of life (QoL) is important in diseases for which there is no cure to date, such as Huntington’s disease (HD). A deeper level of understanding is, however, compromised by the lack of studies examining QoL from the perspectives of HD gene expansion carriers (H...

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Main Authors: Pearl J. C. van Lonkhuizen, Anne-Wil Heemskerk, Leanne Slutter, Erik van Duijn, Susanne T. de Bot, Niels H. Chavannes, Eline Meijer, on behalf of the HEALTHE-RND consortium
Format: Article
Language:English
Published: BMC 2024-11-01
Series:Orphanet Journal of Rare Diseases
Subjects:
Huntington disease
Quality of life
Psychological well-being
Qualitative research
Neurodegenerative diseases
Online Access:https://doi.org/10.1186/s13023-024-03461-x
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https://doi.org/10.1186/s13023-024-03461-x

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