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Caregiver Burden of Patients With Huntington’s Disease in South Korea

Title
Caregiver Burden of Patients With Huntington’s Disease in South Korea
Authors
LeeChan YoungShinChaewonHwangYun SuOhEungseokKimManhoHyun SookChungSun JuSungYoung HeeYoonWon TaeChoJin WhanJae-HyeokHan-JoonChangHee JinJeonBeomseokWooKyung AhKohSeong-BeomKwonKyum-YilMoonJangsupYoung EunJee-Young
Ewha Authors
이찬영
SCOPUS Author ID
이찬영scopus
Issue Date
2024
Journal Title
Journal of Movement Disorders
ISSN
2005-940XJCR Link
Citation
Journal of Movement Disorders vol. 17, no. 1, pp. 30 - 37
Keywords
Caregiver burdenFunctional capacityHuntington’s diseaseIndependencyProspective cohort
Publisher
Korean Movement Disorder Society
Indexed
SCIE; SCOPUS; KCI scopus
Document Type
Article
Abstract
Objective This is the first prospective cohort study of Huntington’s disease (HD) in Korea. This study aimed to investigate the caregiver burden in relation to the characteristics of patients and caregivers. Methods From August 2020 to February 2022, we enrolled patients with HD from 13 university hospitals in Korea. We used the 12-item Zarit Burden Interview (ZBI-12) to evaluate the caregiver burden. We evaluated the clinical associations of the ZBI-12 scores by linear regression analysis and investigated the differences between the low-and high-burden groups. Results Sixty-five patients with HD and 45 caregivers were enrolled in this cohort study. The average age at onset of motor symptoms was 49.3 ± 12.3 years, with an average cytosine-adenine-guanine (CAG)n of 42.9 ± 4.0 (38–65). The median ZBI-12 score among our caregivers was 17.6 ± 14.2. A higher caregiver burden was associated with a more severe Shoulson–Fahn stage (p = 0.038) of the patients. A higher ZBI-12 score was also associated with lower independence scale (B =-0.154, p = 0.006) and functional capacity (B =-1.082, p = 0.002) scores of patients. The caregiving duration was longer in the high-than in the low-burden group. Caregivers’ demographics, blood relation, and marital and social status did not affect the burden significantly. Conclusion HD patients’ neurological status exerts an enormous impact on the caregiver burden regardless of the demographic or social status of the caregiver. This study emphasizes the need to establish an optimal support system for families dealing with HD in Korea. A future longitudinal analysis could help us understand how disease progression aggravates the caregiver burden throughout the entire disease course. © 2024 The Korean Movement Disorder Society.
DOI
10.14802/jmd.23134
Appears in Collections:
의료원 > 의료원 > Journal papers
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