Clinical genetics
-
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. ⋯ 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.