- Validation of the Korean Version of the Huntington’s Disease Quality of Life Battery for Carers
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Hee Jin Chang, Eungseok Oh, Won Tae Yoon, Chan Young Lee, Kyum-Yil Kwon, Yun Su Hwang, Chaewon Shin, Jee-Young Lee
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J Mov Disord. 2025;18(2):160-164. Published online December 30, 2024
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DOI: https://doi.org/10.14802/jmd.24217
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 Abstract
 PDF Supplementary Material
- Objective
The Huntington’s Disease Quality of Life Battery for Carers (HDQoL-C) is used to evaluate caregiver quality of life. This study aimed to develop and validate the Korean version of the HDQoL-C (K-HDQoL-C) to assess the burden on Korean caregivers of Huntington’s disease (HD) patients.
Methods
A total of 19 HD caregivers (7 females, mean age 55.4±14.6 years) participated in this study. The K-HDQoL-C, a translation of the English version, consisted of demographic information, caring aspects, life satisfaction, and feelings about life. It was administered twice, 2 weeks apart. Internal consistency was evaluated using Cronbach’s α, and test-retest reliability was assessed with intraclass correlation coefficients. The relationship with the Zarit Burden Interview-12 (ZBI-12) was analyzed.
Results
The internal consistencies of the K-HDQoL-C were 0.771 (part 2), 0.938 (part 3), and 0.891 (part 4). The test-retest reliability ranged from 0.908 to 0.936. Part 3 was negatively correlated with the ZBI-12, and part 4 was positively correlated with the ZBI-12 (r=-0.780, 0.923; p<0.001).
Conclusion
The K-HDQoL-C effectively evaluates the challenges faced by HD caregivers, particularly in terms of care aspects and life satisfaction.
- Caregiver Burden of Patients With Huntington’s Disease in South Korea
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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
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J Mov Disord. 2024;17(1):30-37. Published online September 11, 2023
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DOI: https://doi.org/10.14802/jmd.23134
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Abstract
PDFSupplementary Material
- 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.
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Citations
Citations to this article as recorded by  - Attitude toward physical activity among Asian American family caregivers of persons living with dementia
JiWon Choi, Van Park, Andrew Jung, Janice Tsoh
Geriatric Nursing.2025; 62: 276. CrossRef - Non-Pharmacological Interventions for Caregivers of People with Motor Neurone Disease: A Scoping Review of Psychosocial Outcomes
Chidera Okoh, Leighanne Mayall, Selina M. Makin, Cliff Chen, Nicolò Zarotti
Brain Sciences.2025; 15(2): 112. CrossRef - A Practical Guide for Diagnostic Investigations and Special Considerations in Patients With Huntington’s Disease in Korea
Jangsup Moon, Eungseok Oh, Minkyeong Kim, Ryul Kim, Dallah Yoo, Chaewon Shin, Jee-Young Lee, Jong-Min Kim, Seong-Beom Koh, Manho Kim, Beomseok Jeon
Journal of Movement Disorders.2025; 18(1): 17. CrossRef - Validation of the Korean Version of the Huntington’s Disease Quality of Life Battery for Carers
Hee Jin Chang, Eungseok Oh, Won Tae Yoon, Chan Young Lee, Kyum-Yil Kwon, Yun Su Hwang, Chaewon Shin, Jee-Young Lee
Journal of Movement Disorders.2025; 18(2): 160. CrossRef - A Practical Guide for Clinical Approach to Patients With Huntington’s Disease in Korea
Chaewon Shin, Ryul Kim, Dallah Yoo, Eungseok Oh, Jangsup Moon, Minkyeong Kim, Jee-Young Lee, Jong-Min Kim, Seong-Beom Koh, Manho Kim, Beomseok Jeon
Journal of Movement Disorders.2024; 17(2): 138. CrossRef
- A Case of AOA2 With Compound Heterozygous SETX Mutations
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Hee Jin Chang, Ryul Kim, Minchae Kim, Jangsup Moon, Man Jin Kim, Han-Joon Kim
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J Mov Disord. 2022;15(2):178-180. Published online December 24, 2021
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DOI: https://doi.org/10.14802/jmd.21139
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Citations
Citations to this article as recorded by - Implementing genomic medicine in clinical practice for adults with undiagnosed rare diseases
Jong Hyeon Ahn, Jihoon G. Yoon, Jaeso Cho, Seungbok Lee, Sheehyun Kim, Man Jin Kim, Soo Yeon Kim, Soon-Tae Lee, Kon Chu, Sang Kun Lee, Han-Joon Kim, Jinyoung Youn, Ja-Hyun Jang, Jong-Hee Chae, Jangsup Moon, Jin Whan Cho
npj Genomic Medicine.2024;[Epub] CrossRef
- Efficacy of levodopa/benserazide dispersible tablet on the ‘Delayed-ON’ to first morning dose in patients with Parkinson’s disease with motor fluctuations: a multicenter, randomized, open-label, cross-over trial
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Hee Jin Chang, Jongkyu Park, Sohee Oh, Chae Won Shin, Ji Won Kim, Jin Whan Cho, Jee-Young Lee
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Received February 5, 2025 Accepted May 3, 2025 Published online May 7, 2025
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DOI: https://doi.org/10.14802/jmd.25031
[Accepted]
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Abstract
PDF
- Background
Delayed ON is a condition in which Parkinson's disease (PD) patients do not experience the effect of levodopa in time after taking the dosage. The efficacy of various oral levodopa regimens to overcome this problem has been investigated limitedly.
Objective
To evaluate the efficacy of levodopa/benserazide dispersible tablet in PD patients with delayed ON to first morning dose.
Methods
This multicenter, randomized, cross-over trial involved 40 eligible PD patients with delayed ON. Participants were randomized to receive either levodopa/benserazide 100mg dispersible or regular tablets for 4 weeks, thereafter one week wash-out interval, followed by an alternate drug for another 4-week. Participants took the investigational drug with the first-morning dose of their antiparkinsonian medications. Other medications were unchanged during the trial. The primary outcome was changes in time-to-ON after the first-morning dose recorded in a special diary before and after each therapy. We also evaluated changes in parkinsonism, motor fluctuations, and dyskinesia using the Unified PD Rating Scale and Unified Dyskinesia Rating Scale. Finally, we investigated whether the efficacy wase affected by Helicobacter pylori status using baseline serum samples from every participant.
Results
Nine patients dropped out during the trial. The time-to-ON was significantly reduced by the dispersible tablet compared with the regular tablet (-34.72 vs -23.81 minutes, p=0.014). There were no significant changes in parkinsonian severity or dyskinesia with either drug. The dispersible formulation was beneficial for both Helicobacter pylori-positive and -negative groups.
Conclusion
Levodopa/benserazide dispersible formulations can improve time-to-ON without exacerbating dyskinesia in PD patients suffering from delayed ON.
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