Abstract
The purpose of this article is to provide a current update and extended overview on a series of studies that aimed to systematically investigate the factors that enhance and compromise the lives of Huntington's disease spousal carers by using the theoretical construct of quality of life. Three exploratory studies provided evidence that spousal carers have specific difficulties maintaining their quality of life while continuing in a primary care-giving role. These initial findings prepared the way for the development of a disease-specific quality of life questionnaire for spousal carers of Huntington's disease patients, the Huntington's Disease Quality of Life Battery for Carers (HDQoL-C). A final study found that the questionnaire demonstrated good internal consistency, test-retest reliability and face validity. It is hoped that the HDQoL-C will be used in the future to quantify the caregiving experience in Huntington's disease in order to implement and assess therapeutic interventions.
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