Abstract
Objective To determine the factors that most influence the quality of life (QOL) of caregivers of persons with Huntington's disease (HD). Background Long-term care of individuals with HD rests mainly with family or partner caregivers, and HD care may pose unique burdens not seen in other disorders. For example, HD caregivers may need to provide various levels of care to multiple individuals over the course of their life. Identification of the factors that affect HD caregiver QOL may provide insights into easing caregiver burden. Methods 31 HD caregivers (21 female, age = 56 ± 11 yr, range 25–76) completed the 33-item HDQoL-C questionnaire (an unpublished QOL questionnaire for HD caregivers), provided demographic information, and responded to a single item question rating overall QOL; in addition, qualitative information was collected through two free-text questions about what factors would most improve QOL. Results The mean score on the questionnaire was 55%, indicating suboptimal quality of life. The single item self-reported QOL question correlated with the total score on the HDQoL-C (r = 0.67, p Conclusions Providing respite from care giving specifically involving social activities may improve HD caregiver QOL. Further studies involving specific interventions to improve HD caregiver QOL are warranted.
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