- 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
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- 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
- 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
- Rapid Eye Movement Sleep Behavior Disorder in Parkinson’s Disease: A Preliminary Study
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Chang Soo Kim, Young Hee Sung, Min Ju Kang, Kee Hyung Park
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J Mov Disord. 2016;9(2):114-119. Published online March 2, 2016
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DOI: https://doi.org/10.14802/jmd.15039
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- Objective
Rapid eye movement sleep behavior disorder (RBD) is associated with α-synucleinopathies, such as Parkinson’s disease (PD). We aimed to assess the differences in the clinical characteristics of PD with and without RBD.
Methods
Forty-two patients previously diagnosed with PD were evaluated for clinical history, motor and cognitive functioning using the Unified Parkinson’s Disease Rating Scale (UPDRS) and Mini-Mental State Examination (MMSE), autonomic symptoms, sleep characteristics using the Pittsburg Sleep Quality Index (PSQI), and the presence of RBD using the Korean version of the RBD screening questionnaire (RBDSQ). The prevalence of RBD and the patients’ demographic features were evaluated. The patients were classified into two groups, PD with RBD and PD without RBD, based on the RBDSQ scores. The motor and cognitive functions, as well as other clinical features of the two groups were compared.
Results
A total of 42 PD patients were enrolled. Eighteen patients were classified as PD with RBD. Compared to PD without RBD, PD with RBD showed higher scores of rigidity in the UPDRS subscale. Regarding sleep problems, PD with RBD revealed higher sleep disturbance, lower sleep efficiency, and lower overall sleep quality in the PSQI. There was no difference in cognitive dysfunction between the two groups according to the Korean version of the MMSE.
Conclusions
PD with RBD was associated with poorer sleep and motor symptoms. Therefore, RBD symptoms in PD are possibly poor prognostic markers.
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Citations
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- Cerebellar Microstructural Abnormalities in Parkinson’s Disease: a Systematic Review of Diffusion Tensor Imaging Studies
Maryam Haghshomar, Parnian Shobeiri, Seyed Arsalan Seyedi, Fatemeh Abbasi-Feijani, Amirhossein Poopak, Houman Sotoudeh, Arash Kamali, Mohammad Hadi Aarabi The Cerebellum.2022; 21(4): 545. CrossRef - A data-driven system to identify REM sleep behavior disorder and to predict its progression from the prodromal stage in Parkinson's disease
Matteo Cesari, Julie A.E. Christensen, Maria-Lucia Muntean, Brit Mollenhauer, Friederike Sixel-Döring, Helge B.D. Sorensen, Claudia Trenkwalder, Poul Jennum Sleep Medicine.2021; 77: 238. CrossRef - Impact of Obstructive Sleep Apnea on Cognitive and Motor Functions in Parkinson's Disease
Mohamed Elfil, Eshak I. Bahbah, Mahmoud M. Attia, Mohamed Eldokmak, Brian B. Koo Movement Disorders.2021; 36(3): 570. CrossRef - Sleep Disorders and Cognitive Dysfunctions in Parkinson’s Disease: A Meta-Analytic Study
Gianpaolo Maggi, Luigi Trojano, Paolo Barone, Gabriella Santangelo Neuropsychology Review.2021; 31(4): 643. CrossRef - Risk stratification for REM sleep behavior disorder in patients with Parkinson’s disease: A PRISMA-compliant meta-analysis and systematic review
Chengjuan Xie, Mingyu Zhu, Ying Hu Clinical Neurology and Neurosurgery.2021; 202: 106484. CrossRef - REM sleep behavior disorder portends poor prognosis in Parkinson’s disease: A systematic review
Yoon Kim, Young Eun Kim, Eun Ok Park, Chae Won Shin, Han-Joon Kim, Beomseok Jeon Journal of Clinical Neuroscience.2018; 47: 6. CrossRef - Prevalence of rapid eye movement sleep behavior disorder (RBD) in Parkinson’s disease: a meta and meta-regression analysis
Xiaona Zhang, Xiaoxuan Sun, Junhong Wang, Liou Tang, Anmu Xie Neurological Sciences.2017; 38(1): 163. CrossRef - Clinical variations in Parkinson’s disease patients with or without REM sleep behaviour disorder: a meta-analysis
Ruo-lin Zhu, Cheng-juan Xie, Pan-pan Hu, Kai Wang Scientific Reports.2017;[Epub] CrossRef
- Correlation of Sleep Disturbance and Cognitive Impairment in Patients with Parkinson’s Disease
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Eun Ja Kim, Joon Hyun Baek, Dong Jin Shin, Hyeon-Mi Park, Yeong-Bae Lee, Kee-Hyung Park, Dong Hoon Shin, Young Noh, Young Hee Sung
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J Mov Disord. 2014;7(1):13-18. Published online April 30, 2014
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DOI: https://doi.org/10.14802/jmd.14003
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14,072
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- Objective: Cognitive impairment is a common nonmotor symptom of Parkinson’s disease (PD) and is associated with high mortality, caregiver distress, and nursing home placement. The risk factors for cognitive decline in PD patients include advanced age, longer disease duration, rapid eye movement sleep behavior disorder, hallucinations, excessive daytime sleepiness, and nontremor symptoms including bradykinesia, rigidity, postural instability, and gait disturbance. We conducted a cross-sectional study to determine which types of sleep disturbances are related to cognitive function in PD patients.
Methods: A total of 71 PD patients (29 males, mean age 66.46 ± 8.87 years) were recruited. All patients underwent the Mini- Mental State Examination (MMSE) and the Korean Version of the Montreal Cognitive Assessments (MoCA-K) to assess global cognitive function. Sleep disorders were evaluated with the Stanford Sleepiness Scale, Epworth Sleepiness Scale, Insomnia Severity Index (ISI), Pittsburg Sleep Quality Index, and Parkinson’s Disease Sleep Scale in Korea (PDSS). Results: The ISI was correlated with the MMSE, and total PDSS scores were correlated with the MMSE and the MoCA-K. In each item of the PDSS, nocturnal restlessness, vivid dreams, hallucinations, and nocturnal motor symptoms were positively correlated with the MMSE, and nocturnal restlessness and vivid dreams were significantly related to the MoCA-K. Vivid dreams and nocturnal restlessness are considered the most powerful correlation factors with global cognitive function, because they commonly had significant correlation to cognition assessed with both the MMSE and the MoCA-K.
Conclusions: We found a correlation between global cognitive function and sleep disturbances, including vivid dreams and nocturnal restlessness, in PD patients.
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Sarawut Lapmanee, Sakkarin Bhubhanil, Prapimpun Wongchitrat, Natthawut Charoenphon, Anjaree Inchan, Thitaphat Ngernsutivorakul, Piroonrat Dechbumroong, Mattaka Khongkow, Katawut Namdee Pharmaceutics.2024; 16(4): 514. CrossRef - Evaluation and validation of a patient-reported quality-of-life questionnaire for Parkinson’s disease
Pantelis Stathis, George Papadopoulos Journal of Patient-Reported Outcomes.2022;[Epub] CrossRef - Poor sleep quality is associated with fatigue and depression in early Parkinson's disease: A longitudinal study in the PALS cohort
Matthew Rui En Koh, Cong Yang Chua, Samuel Yong-Ern Ng, Nicole Shuang-Yu Chia, Seyed Ehsan Saffari, Regina Yu-Ying Chen, Xinyi Choi, Dede Liana Heng, Shermyn Xiumin Neo, Kay Yaw Tay, Wing Lok Au, Eng-King Tan, Louis Chew-Seng Tan, Zheyu Xu Frontiers in Neurology.2022;[Epub] CrossRef - Dream Content Predicts Motor and Cognitive Decline in Parkinson's Disease
Abidemi I. Otaiku Movement Disorders Clinical Practice.2021; 8(7): 1041. CrossRef - The impact of clinical scales in Parkinson’s disease: a systematic review
Nikita Aggarwal, Barjinder Singh Saini, Savita Gupta The Egyptian Journal of Neurology, Psychiatry and Neurosurgery.2021;[Epub] CrossRef - Depressive symptoms effect subjective sleep quality in Chinese patients with Parkinson’s disease
Jun Zhu, Min Zhong, Jun Yan, Zhuang Wu, Yang Pan, Bo Shen, Jingde Dong, Li Zhang Clinical Neurology and Neurosurgery.2020; 195: 105950. CrossRef - Effects of agomelatine in rotenone-induced Parkinson’s disease in rats
Caner Günaydın, Bahattin Avcı, Ayhan Bozkurt, Mehmet Emin Önger, Hakan Balcı, S. Sırrı Bilge Neuroscience Letters.2019; 699: 71. CrossRef - Sleep quality is associated with the severity of clinical symptoms in Parkinson’s disease
Bruno T. Junho, Arthur Kummer, Francisco E. Cardoso, Antonio L. Teixeira, Natalia P. Rocha Acta Neurologica Belgica.2018; 118(1): 85. CrossRef - Circadian Rest‐Activity Rhythms Predict Cognitive Function in Early Parkinson's Disease Independently of Sleep
Jade Q. Wu, Peng Li, Karina Stavitsky Gilbert, Kun Hu, Alice Cronin‐Golomb Movement Disorders Clinical Practice.2018; 5(6): 614. CrossRef - Sleep Disturbance May Alter White Matter and Resting State Functional Connectivities in Parkinson’s Disease
Seok Jong Chung, Yong-Ho Choi, Hunki Kwon, Yeong-Hun Park, Hyuk Jin Yun, Han Soo Yoo, Seock Hyeon Moon, Byoung Seok Ye, Young H. Sohn, Jong-Min Lee, Phil Hyu Lee Sleep.2017;[Epub] CrossRef - Schlaf und Schlafstörungen bei alten Menschen
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