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- Original Article Caregiver burden of patients with Huntington’s disease in South Korea
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Chan Young Lee1
, Chaewon Shin2
, Yun Su Hwang3,4
, Eungseok Oh5
, Manho Kim6
, Hyun Sook Kim7
, Sun Ju Chung8
, Young Hee Sung9
, Won Tae Yoon10
, Jin Whan Cho11
, Jae-Hyeok Lee12
, Han-Joon Kim6
, Hee Jin Chang6
, Beomseok Jeon6
, Kyung Ah Woo6
, Seong-Beom Koh13
, Kyum-Yil Kwon14, Jangsup Moon6,15
, Young Eun Kim16
, Jee-Young Lee17
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DOI: https://doi.org/10.14802/jmd.23134 [Accepted]
Published online: September 11, 2023
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2Department of Neurology, Chungnam National University Sejong Hospital, Sejong; Chungnam National University College of Medicine, Daejon, Republic of Korea
3Department of Neurology, Jeonbuk National University Medical School and Hospital, Jeonju, Republic of Korea
4Research Institute of Clinical Medicine of Jeonbuk National University – Biomedical Research Institute of Jeonbuk National University Hospital, Jeonju, Republic of Korea
5Department of Neurology, Chungnam National University College of Medicine and Hospital, Daejeon, Republic of Korea
6Department of Neurology, College of Medicine, Seoul National University Hospital, Seoul, Republic of Korea
7Department of Neurology, Bundang Medical Center, CHA university School of Medicine, Seongnam, Republic of Korea
8Department of Neurology, Asan Medical Center, University of Ulsan College of Medicine, Seoul, Republic of Korea
9Department of Neurology, Gil Medical Center, Gachon University Sollege of Medicine, Incheon, Republic of Korea
10Department of Neurology, Kangbuk Samsung Hospital, Sungkyunkwan University School of Medicine, Seoul, Republic of Korea
11Department of Neurology, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Republic of Korea
12Department of Neurology, Research Institute for Convergence of Biomedical Science and Technology, Pusan National University Yangsan Hospital, Pusan, Republic of Korea
13Department of Neurology, Korea University Guro Hospital, Korea University College of Medicine, Seoul, Republic of Korea
14Department of Neurology, Soonchunhyang University Seoul Hospital, Seoul, Republic of Korea
15Department of Genomic Medicine, Seoul National University Hospital, Seoul, Republic of Korea
16Department of Neurology, Hallym University Sacred Heart Hospital, Anyang, Republic of Korea
17Department of Neurology, Seoul National University College of Medicine & Seoul Metropolitan Government-Seoul National University Boramae Medical Center, Seoul, Republic of Korea
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Corresponding author:
Jee-Young Lee, Tel: +82-2-870-2476, Fax: +82-2-831-2826,
Email: wieber04@snu.ac.kr
Chan Young Lee and Chaewon Shin contributed equally to this study as co-first authors.
Abstract
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.
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