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Clin Genet. 2007 May;71(5):434-45.

The Huntington's disease quality of life battery for carers: reliability and validity.

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1
School of Nursing, University of Nottingham, Nottingham, UK.

Abstract

Research into the experience of the Huntington Disease (HD) spousal carer has established that carers experience several unique obstacles within their care-giving role. However, there is still a need to establish methodically the factors that impact on the HD spousal carers' situation and ultimately their quality of life. The aim of this pilot study, which was a result of three previous exploratory studies, was to validate a HD-specific quality-of-life (QoL) measure, the Huntington disease quality-of-life battery for carers (HDQoL-C) for use (initially) with spousal carers of HD patients. Eighty-seven HD spousal carers took part in the piloting of the HDQoL-C to assess its reliability and validity as a tool for use within QoL research. Results established the HDQoL-C as a multidimensional and psychometrically sound disease-specific and subjective QoL assessment tool that incorporates the individual's physical health, psychological state, level of independence, social relationships and personal beliefs. The HDQoL-C demonstrates good internal consistency, test-re-test reliability and congruent validity.

[Indexed for MEDLINE]

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