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

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.