Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective

Ho, A. K., Hocaoglu, M. B. and Hughes, Alis 2011. Impact of Huntington's across the entire disease spectrum: the phases and stages of disease from the patient perspective. Clinical Genetics 80 (3) , pp. 235-239. 10.1111/j.1399-0004.2011.01748.x

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Abstract

Although Huntington's disease (HD) is a neurodegenerative disease characterized by motor, cognitive and behavioural disturbances, there has been little empirical data examining what patients are most concerned about throughout the different stages of disease, which can span many years. Semi-structured face-to-face interviews were individually conducted with 31 people living with different stages of Huntington's, from pre-clinical gene carriers to advanced stage. We examined how often participants raised issues and concerns regarding the impact of Huntington's on everyday life. The Physical/functional theme hardly featured pre-clinically, but was strongly present from Stage 1, rose steadily and peaked at Stage 5. There were no significant changes between stages for the Emotional, Social, and Self themes that all featured across all stages, indicating that these issues were not raised more frequently over the course of the disease. Likewise, the more rarely mentioned Financial and Legal themes also remained similar across stages. However, the Cognitive theme only featured between Stages 1 and 4, and hardly at all pre-clinically and at Stage 5. These findings provide insight into patients' important and unique perspective and have implications for the management and development of interventions across the spectrum of HD stages.

Item Type:	Article
Date Type:	Publication
Status:	Published
Schools:	Medicine MRC Centre for Neuropsychiatric Genetics and Genomics (CNGG)
Subjects:	R Medicine > R Medicine (General)
Additional Information:	Alis Hughes is a member of the European Huntington's Disease Network Quality of Life working group
Publisher:	Wiley-Blackwell
ISSN:	0009-9163
Last Modified:	23 Mar 2017 05:46
URI:	https://orca.cardiff.ac.uk/id/eprint/85597

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