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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
J Mov Disord. 2024;17(1):30-37.   Published online September 11, 2023
DOI: https://doi.org/10.14802/jmd.23134
  • 3,977 View
  • 447 Download
  • 1 Web of Science
  • 2 Crossref
  • 1 Comments
AbstractAbstract 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.

Citations

Citations to this article as recorded by  
  • 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
  • Attitude toward physical activity among Asian American family caregivers of persons living with dementia
    JiWon Choi, Van Park, Andrew Jung, Janice Tsoh
    Geriatric Nursing.2024;[Epub]     CrossRef
Letters to the editor
Investigation of the Long-Term Effects of Amantadine Use in Parkinson’s Disease
Sangmin Park, Jung Hwan Shin, Seung Ho Jeon, Chan Young Lee, Han-Joon Kim, Beomseok Jeon
J Mov Disord. 2023;16(2):224-226.   Published online May 24, 2023
DOI: https://doi.org/10.14802/jmd.23037
  • 2,106 View
  • 75 Download
PDFSupplementary Material
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Absence of Alpha-Synuclein Pathology in the Stomach of a Patient With Prodromal Dementia With Lewy Bodies
Chaewon Shin, Seong-Ik Kim, Sung-Hye Park, Jung Hwan Shin, Chan Young Lee, Han-Joon Kim, Hyuk-Joon Lee, Seong-Ho Kong, Yun-Suhk Suh, Han-Kwang Yang, Beomseok Jeon
J Mov Disord. 2023;16(2):213-216.   Published online April 26, 2023
DOI: https://doi.org/10.14802/jmd.22219
  • 1,417 View
  • 68 Download
PDFSupplementary Material
Brief communication
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Sensitivity of Detecting Alpha-Synuclein Accumulation in the Gastrointestinal Tract and Tissue Volume Examined
Chaewon Shin, Seong-Ik Kim, Sung-Hye Park, Jung Hwan Shin, Chan Young Lee, Han-Kwang Yang, Hyuk-Joon Lee, Seong-Ho Kong, Yun-Suhk Suh, Han-Joon Kim, Beomseok Jeon
J Mov Disord. 2022;15(3):264-268.   Published online July 26, 2022
DOI: https://doi.org/10.14802/jmd.22042
  • 3,500 View
  • 112 Download
  • 1 Web of Science
  • 1 Crossref
AbstractAbstract PDFSupplementary Material
Objective
This study aimed to evaluate whether a larger tissue volume increases the sensitivity of detecting alpha-synuclein (AS) pathology in the gastrointestinal (GI) tract.
Methods
Nine patients with Parkinson’s disease (PD) or idiopathic rapid eye movement sleep disorder (iRBD) who underwent GI operation and had full-depth intestinal blocks were included. All patients were selected from our previous study population. A total of 10 slides (5 serial sections from the proximal and distal blocks) per patient were analyzed.
Results
In previous studies, pathologic evaluation revealed phosphorylated AS (+) in 5/9 patients (55.6%) and in 1/5 controls (20.0%); in this extensive examination, this increased to 8/9 patients (88.9%) but remained the same in controls (20.0%). The severity and distribution of positive findings were similar between patients with iRBD and PD.
Conclusion
Examining a large tissue volume increased the sensitivity of detecting AS accumulation in the GI tract.

Citations

Citations to this article as recorded by  
  • Symmetric and Profound Monoaminergic Degeneration in Parkinson’s Disease with Premotor REM Sleep Behavior Disorder
    Kyung Ah Woo, Han-Joon Kim, Jung Hwan Shin, Kangyoung Cho, Hongyoon Choi, Beomseok Jeon
    Journal of Parkinson's Disease.2024; 14(4): 823.     CrossRef
Original Article
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Development of Clinical Milestones in Parkinson’s Disease After Bilateral Subthalamic Deep Brain Stimulation
Jed Noel A. Ong, Jung Hwan Shin, Seungho Jeon, Chan Young Lee, Han-Joon Kim, Sun Ha Paek, Beomseok Jeon
J Mov Disord. 2022;15(2):124-131.   Published online May 26, 2022
DOI: https://doi.org/10.14802/jmd.21106
  • 3,200 View
  • 151 Download
  • 1 Web of Science
  • 1 Crossref
AbstractAbstract PDFSupplementary Material
Objective
Deep brain stimulation of the subthalamic nucleus (STN-DBS) in Parkinson’s disease (PD) patients does not halt disease progression, as these patients will progress and develop disabling non-levodopa responsive symptoms. These features may act as milestones that represent the overall functionality of patients after DBS. The objective of this study was to investigate the development of clinical milestones in advanced PD patients who underwent bilateral STN-DBS.
Methods
The study evaluated PD patients who underwent STN-DBS at baseline up to their last follow-up using the Unified Parkinson’s Disease Rating Scale and Hoehn and Yahr scale. The symptoms of hallucinations, dysarthria, dysphagia, frequent falls, difficulty walking, cognitive impairment and the loss of autonomy were chosen as the clinical milestones.
Results
A total of 106 patients with a mean age of 47.21 ± 10.52 years at disease onset, a mean age of 58.72 ± 8.74 years at surgery and a mean disease duration of 11.51 ± 4.4 years before surgery were included. Initial improvement of motor symptoms was seen after the surgery with the appearance of clinical milestones over time. Using the moderately disabling criteria, 81 patients (76.41%) developed at least one clinical milestone, while 48 patients (45.28%) developed a milestone when using the severely disabling criteria.
Conclusion
STN-DBS has a limited effect on axial and nonmotor symptoms of the PD patients, in contrast to the effect on motor symptoms. These symptoms may serve as clinical milestones that can convey the status of PD patients and its impact on the patients and their caregivers. Therefore, advanced PD patients, even those treated with bilateral STN-DBS, will still require assistance and cannot live independently in the long run.

Citations

Citations to this article as recorded by  
  • Unveiling the Impact of Outpatient Physiotherapy on Specific Motor Symptoms in Parkinson’s Disease: A Prospective Cohort Study
    Yuta Terasawa, Koki Ikuno, Shintaro Fujii, Yuki Nishi, Emi Tanizawa, Sachio Nabeshima, Yohei Okada
    Brain & Neurorehabilitation.2023;[Epub]     CrossRef
Brief communication
Article image
Automatic Measurement of Postural Abnormalities With a Pose Estimation Algorithm in Parkinson’s Disease
Jung Hwan Shin, Kyung Ah Woo, Chan Young Lee, Seung Ho Jeon, Han-Joon Kim, Beomseok Jeon
J Mov Disord. 2022;15(2):140-145.   Published online January 19, 2022
DOI: https://doi.org/10.14802/jmd.21129
  • 3,852 View
  • 271 Download
  • 5 Web of Science
  • 5 Crossref
AbstractAbstract PDFSupplementary Material
Objective
This study aims to develop an automated and objective tool to evaluate postural abnormalities in Parkinson’s disease (PD) patients.
Methods
We applied a deep learning-based pose-estimation algorithm to lateral photos of prospectively enrolled PD patients (n = 28). We automatically measured the anterior flexion angle (AFA) and dropped head angle (DHA), which were validated with conventional manual labeling methods.
Results
The automatically measured DHA and AFA were in excellent agreement with manual labeling methods (intraclass correlation coefficient > 0.95) with mean bias equal to or less than 3 degrees.
Conclusion
The deep learning-based pose-estimation algorithm objectively measured postural abnormalities in PD patients.

Citations

Citations to this article as recorded by  
  • Botulinum Toxin for Axial Postural Abnormalities in Parkinson’s Disease: A Systematic Review
    Marialuisa Gandolfi, Carlo Alberto Artusi, Gabriele Imbalzano, Serena Camozzi, Mauro Crestani, Leonardo Lopiano, Michele Tinazzi, Christian Geroin
    Toxins.2024; 16(5): 228.     CrossRef
  • Research Progress of Camptocormia in Parkinson Disease
    Yilin Lu, Xiang Zhang, Junyu Li, Weishi Li, Miao Yu
    Clinical Spine Surgery.2024;[Epub]     CrossRef
  • Three‐Dimensional Mesh Recovery from Common 2‐Dimensional Pictures for Automated Assessment of Body Posture in Camptocormia
    Robin Wolke, Olga Gavriliuc, Oliver Granert, Günther Deuschl, Nils G. Margraf
    Movement Disorders Clinical Practice.2023; 10(3): 472.     CrossRef
  • Assessment of Axial Postural Abnormalities in Parkinsonism: Automatic Picture Analysis Software
    Carlo Alberto Artusi, Christian Geroin, Gabriele Imbalzano, Serena Camozzi, Stefano Aldegheri, Leonardo Lopiano, Michele Tinazzi, Nicola Bombieri
    Movement Disorders Clinical Practice.2023; 10(4): 636.     CrossRef
  • Camera- and Viewpoint-Agnostic Evaluation of Axial Postural Abnormalities in People with Parkinson’s Disease through Augmented Human Pose Estimation
    Stefano Aldegheri, Carlo Alberto Artusi, Serena Camozzi, Roberto Di Marco, Christian Geroin, Gabriele Imbalzano, Leonardo Lopiano, Michele Tinazzi, Nicola Bombieri
    Sensors.2023; 23(6): 3193.     CrossRef

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