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

Ho, A. K. ORCID: https://orcid.org/0000-0002-2581-126X and Hocaoglu, M. B. (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. ISSN 1399-0004 doi: 10.1111/j.1399-0004.2011.01748.x

Abstract/Summary

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
URI	https://reading-clone.eprints-hosting.org/id/eprint/26367
Item Type	Article
Refereed	Yes
Divisions	Life Sciences > School of Psychology and Clinical Language Sciences > Psychopathology and Affective Neuroscience Life Sciences > School of Psychology and Clinical Language Sciences > Ageing Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology Life Sciences > School of Psychology and Clinical Language Sciences > Nutrition and Health Life Sciences > School of Psychology and Clinical Language Sciences > Language and Cognition Life Sciences > School of Psychology and Clinical Language Sciences > Perception and Action
Publisher	Wiley
Publisher Statement	Available in CentAUR via Wiley OnlineOpen
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