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Original Article
- Caregiver burden of patients with Huntington’s disease in South Korea
- Chan Young Lee, Chaewon Shin, Yun Su Hwang, Eungseok Oh, Manho Kim, Hyun Sook Kim, Sun Ju Chung, Young Hee Sung, Won Tae Yoon, Jin Whan Cho, Jae-Hyeok Lee, Han-Joon Kim, Hee Jin Chang, Beomseok Jeon, Kyung Ah Woo, Seong-Beom Koh, Kyum-Yil Kwon, Jangsup Moon, Young Eun Kim, Jee-Young Lee
- Received July 19, 2023 Accepted September 8, 2023 Published online September 11, 2023
- DOI: https://doi.org/10.14802/jmd.23134 [Accepted]
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Abstract
PDF - Purpose
This is the first prospective cohort study of Huntington’s disease (HD) in Korea. This study aimed to investigate 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 collected the 12-item Zarit Burden Interview (ZBI-12) to evaluate the caregiver burden. We evaluated the clinical associates of the ZBI-12 scores by the linear regression analysis and investigated the difference between the low and high burden groups.
Results
Sixty-five patients with HD and 45 caregivers have been enrolled in this cohort study so far. The average onset of motor symptoms was 49.3±12.3 years with the average (CAG)n of 42.9±4.0 (38-65). The ZBI-12 score in our caregivers were 17.6±14.2. The higher caregiver burden was associated with the more severe Shoulson and Fahn stages (p-value=0.038) of the patients. The higher ZBI-12 score was also associated with the lower independence scale (B=-0.154, p-value=0.006) and the functional capacity (B=-1.082, p-value=0.002) of patients. The caregiving duration was longer in the high than the low burden groups. Caregivers’ demographic, blood-relation, and marital and social status did not affect the burden significantly.
Conclusion
HD patient’s neurological status exerts huge impact on the caregiver burden regardless of the demographic or social status of the caregiver. This study emphasizes the need of establishing optimal support system to HD family in Korea. A future longitudinal analysis could help us understand how disease progression aggravate the caregiver burden throughout the entire disease course.
Letter to the editor
- A Case of AOA2 With Compound Heterozygous SETX Mutations
- Hee Jin Chang, Ryul Kim, Minchae Kim, Jangsup Moon, Man Jin Kim, Han-Joon Kim
- J Mov Disord. 2022;15(2):178-180. Published online December 24, 2021
- DOI: https://doi.org/10.14802/jmd.21139
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