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An international validation of a clinical tool to assess carers’ quality of life in Huntington’s Disease

Aubeeluck, A. V., Stupple, E. J., Schofield, M., Hughes, A., Van der Meer, L., Landwehrmeyer, B. and Ho, A. K. (2019) An international validation of a clinical tool to assess carers’ quality of life in Huntington’s Disease. Frontiers in Psychology, 10. 1658. ISSN 1664-1078

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To link to this item DOI: 10.3389/fpsyg.2019.01658

Abstract/Summary

Family carers of individual’s living with Huntington’s Disease (HD) manage a distinct and unique series of difficulties arising from the complex nature of HD. This paper presents the validation of the definitive measure of quality of life for this group. The Huntington’s Disease Quality of Life Battery for carers (HDQoL-C) was expanded and then administered to an international sample of 1716 partners and family carers from 13 countries. In terms of the psychometric properties of the tool, exploratory analysis of half of the sample, demonstrated good internal consistency and reliability. Some items on the full version did not meet psychometric thresholds and a short version (HDQoL-Cs) was developed based on more stringent criteria. Confirmatory Factor Analysis of the model structure showed a good fit for all Factors and, indicated that the HDQoL-C and HDQoL-Cs are psychometrically robust measures of quality of life. We found that carers who lived with and looked after their spouse/partner had reduced sense of coping, hope for the future and overall quality of life. Carers with children who were at risk, carried the gene or were symptomatic also had poorer quality of life outcomes. Findings indicated the HDQoL-C and HDQoL-Cs are valid in multiple languages and across varied cultures as measures of self-reported quality of life in family carers of individual’s living with HD. These psychometrically validated tools can aid and guide the implementation of therapeutic interventions to improve life quality in this population.

Item Type:Article
Refereed:Yes
Divisions:Interdisciplinary centres and themes > AgeNet
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Ageing
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Department of Psychology
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Neuroscience
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Psychopathology and Affective Neuroscience
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Nutrition and Health
Faculty of Life Sciences > School of Psychology and Clinical Language Sciences > Social
ID Code:84656
Publisher:Frontiers Media

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