Objective: This study aimed to develop a Korean version of the Huntington’s disease (HD) quality of life battery for carers (K-HDQoL-C) to assess disease-related burden in Korean caregivers of HD patients and validate the scale.

Background: Caregivers of HD often face burnout due to the burden of managing the motor, cognitive, and psychiatric symptoms of HD patients. The Huntington’s Disease Quality of Life Battery for Carers has been developed to explore caregiver quality of life and evaluate therapeutic interventions [1].

Method: The K-HDQoL-C comprised as demographic/objective information (part 1), aspects of caring (part 2), satisfaction with life (part 3), and feelings about life (part 4). It was administered initially and after two weeks for test-retest reliability. The Short Zarit Burden Inventory (S-ZBI), a validated measure of caregiver burden in patients with common chronic neurological conditions, was also used to test for correlation. We explored the correlation between caregiver burden and disease duration, the Unified Huntington’s Disease Rating Scale (UHDRS), and cognitive function (Mini-mental State Examination and Montreal Cognitive Assessment). Internal consistency was assessed via Cronbach’s α-coefficients (criterion value for α≥ 0.70), and test-retest reliability via intraclass correlation coefficient (ICC) in the two-way random effects model. Spearman’s rank correlation coefficients were used for associations with S-ZBI and other variables.

Results: 19 HD caregivers (male 12, female 7, mean age 55.4±14.6 years) participated. The internal consistency of the K-HDQoL-C: 0.771 (part 2), 0.938 (part 3) and 0.569 (part 4). The ICC for test-retest reliability: 0.920 (part 2), 0.908 (part 3) and 0.936 (part 4). Part 3 of the K-HDQoL-C showed negative correlation with the S-ZBI (R = -0.780, p<0.001), while no significant correlations were observed for other parts. Disease duration and cognitive function showed no correlation with the K-HDQoL-C. Part 2 of the K-HDQoL-C exhibited a negative correlation with the functional assessment of the UHDRS.

Conclusion: The K-HDQoL-C appears to be a reliable tool for assessing the problems of HD caregivers, especially the aspects of caring and life satisfaction. The part 4 dealing with feeling about life, seemed to reflect the carer’s personal and subjective state of mind and might represent an unmet need of our medical system supporting HD family.

References: 1. Aubeeluck A, Buchanan H. The Huntington’s disease quality of life battery for carers: reliability and validity. Clin Genet. 2007 May;71(5):434-45.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/validation-of-the-korean-version-of-the-huntingtons-disease-quality-of-life-battery-for-carers/