Journal of Movement Disorders

Original Articles

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

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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.

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

Health-Related Quality of Life for Parkinson’s Disease Patients and Their Caregivers: Michal Lubomski, Ryan L. Davis, Carolyn M. Sue; J Mov Disord. 2021;14(1):42-52. Published online January 12, 2021; DOI: https://doi.org/10.14802/jmd.20079

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Abstract PDF

Objective
Motor and non-motor symptoms (NMS) negatively impact the health-related quality of life (HRQoL) for individuals with Parkinson’s disease (PD), as well as their caregivers. NMS can emerge decades prior to the manifestation of motor symptoms but often go unrecognized and therefore untreated. To guide clinical management, we surveyed differences and identified factors that influence HRQoL in a cohort of PD patients and family caregivers.
Methods
A total of 103 PD patients were compared with 81 caregivers. Outcome measures collected from validated questionnaires included generic and disease-specific HRQoL assessments, depression frequency and severity, constipation severity, upper and lower gastrointestinal symptoms, physical activity and motor symptom severity.
Results
PD patients reported significantly decreased physical and mental HRQoL compared to their caregivers (both p < 0.001). Unemployment, the need for social support services, rehabilitation use, REM sleep behavior disorder, impulse control disorders and features suggestive of increasing disease severity hallmarked by increasing PD duration, higher MDS UPDRS-III (Movement Disorder Society–Unified Parkinson’s Disease Rating Scale–Part III) scores, higher daily levodopa equivalence dose and motor fluctuations were consistent with a lower HRQoL in our PD cohort. Furthermore, decreased physical activity, chronic pain, depression, constipation and upper gastrointestinal dysfunction (particularly indigestion, excess fullness and bloating) suggested vulnerability to reduced HRQoL. Overall, PD patients perceived their health to decline by 12% more than their caregivers did over a 1-year period.
Conclusion
PD patients reported decreased HRQoL, with both motor symptoms and NMS negatively impacting HRQoL. Our findings support the routine clinical screening of HRQoL in PD patients to identify and address modifiable factors.

Citations

Citations to this article as recorded by

Risk factors and intervention of caregiver burden in Parkinson’s disease: a systematic review and meta-analysis
Yan Zhao, Wenxiang Wu, Jianjun Wu, Bin Shen, Yanpei Cao, Yafang Xu
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Health-related quality of life in Parkinson’s disease: systematic review and meta-analysis of EuroQol (EQ-5D) utility scores
Raghu Bhanupriya, Madhumitha Haridoss, Goda Suchitra Lakshmi, Bhavani Shankara Bagepally
Quality of Life Research.2024; 33(7): 1781. CrossRef
Factors associated with self-rated health in people with late-stage parkinson’s and cognitive impairment
Jennifer S. Pigott, Megan Armstrong, Nathan Davies, Daniel Davis, Bastiaan R. Bloem, Stefan Lorenzl, Wassilios G. Meissner, Per Odin, Joaquim J. Ferreira, Richard Dodel, Anette Schrag
Quality of Life Research.2024;[Epub] CrossRef
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Qiaohong Wang, Yiping Chen, Linbo Li, Chao Li, Li Li, Huili Cao, Hui Yang
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Hussaini Adam, Subash C. B. Gopinath, M. K. Md Arshad, Tijjani Adam, N. A. Parmin, Irzaman Husein, Uda Hashim
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Ai Huey Tan, Kee Huat Chuah, Yuan Ye Beh, Jie Ping Schee, Sanjiv Mahadeva, Shen-Yang Lim
Journal of Movement Disorders.2023; 16(2): 138. CrossRef
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A.A. Pilipovich, O.V. Vorobyova, S.A. Makarov
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Sharmila Gopala Krishna Pillai, Nor Azlin Mohd Nordin, Norlinah Mohamed Ibrahim
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Vasileios Skaramagkas, Iro Boura, Cleanthi Spanaki, Emilia Michou, Georgios Karamanis, Zinovia Kefalopoulou, Manolis Tsiknakis
Sensors.2023; 23(18): 7850. CrossRef
Lower gastrointestinal dysfunction in patients with Parkinson’s disease
A.A. Pilipovich, O.V. Vorob’eva, S.A. Makarov, A.V. Kuchuk
Zhurnal nevrologii i psikhiatrii im. S.S. Korsakova.2023; 123(12): 42. CrossRef
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Michal Lubomski, Xiangnan Xu, Andrew J. Holmes, Jean Y. H. Yang, Carolyn M. Sue, Ryan L. Davis
Journal of Neurology.2022; 269(2): 780. CrossRef
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Eduardo Candel-Parra, María Pilar Córcoles-Jiménez, Victoria Delicado-Useros, Marta Carolina Ruiz-Grao, Antonio Hernández-Martínez, Milagros Molina-Alarcón
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Der Nervenarzt.2022; 93(10): 1019. CrossRef
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A. A. Pilipovich, O. V. Vorob’eva, S. A. Makarov, N. N. Shindryaeva, Yu D. Vorob’eva, Seyed-Mohammad Fereshtehnejad
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Nutritional Intake and Gut Microbiome Composition Predict Parkinson’s Disease
Michal Lubomski, Xiangnan Xu, Andrew J. Holmes, Samuel Muller, Jean Y. H. Yang, Ryan L. Davis, Carolyn M. Sue
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The Gut Microbiome in Parkinson’s Disease: A Longitudinal Study of the Impacts on Disease Progression and the Use of Device-Assisted Therapies
Michal Lubomski, Xiangnan Xu, Andrew J. Holmes, Samuel Muller, Jean Y. H. Yang, Ryan L. Davis, Carolyn M. Sue
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Neuropsychiatric Symptoms in Parkinson’s Disease Dementia Are Associated with Increased Caregiver Burden: Yoon-Sang Oh, Ji E. Lee, Phil Hyu Lee, Joong-Seok Kim; J Mov Disord. 2015;8(1):26-32. Published online January 31, 2015; DOI: https://doi.org/10.14802/jmd.14019

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122 Download
37 Web of Science
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Abstract PDF

Objective Neuropsychiatric symptoms are common in Parkinson’s disease dementia (PDD). Frequent and severe neuropsychiatric symptoms create high levels of distress for patients and caregivers, decreasing their quality of life. The aim of this study was to investigate neuropsychiatric symptoms that may contribute to increased caregiver burden in PDD patients.
Methods Forty-eight PDD patients were assessed using the 12-item Neuropsychiatric Inventory (NPI) to determine the frequency and severity of mental and behavioral problems. The Burden Interview and Caregiver Burden Inventory were used to evaluate caregiver burden.
Results All but one patient showed one or more neuropsychiatric symptoms. The three most frequent neuropsychiatric symptoms were apathy (70.8%) and anxiety (70.8%), followed by depression (68.7%). More severe neuropsychiatric symptoms were significantly correlated with increased caregiver burden. The domains of delusion, hallucination, agitation and aggression, anxiety, irritability and lability, and aberrant motor behavior were associated with caregiver stress. After controlling for age and other potential confounding variables, total NPI score was significantly associated with caregiver burden.
Conclusions The results of this study confirm that neuropsychiatric symptoms are frequent and severe in patients with PDD and are associated with increased caregiver distress. A detailed evaluation and management of neuropsychiatric symptoms in PDD patients appears necessary to improve patient quality of life and reduce caregiver burden.

Citations

Citations to this article as recorded by

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 Mo
Journal of Movement Disorders.2024; 17(1): 30. CrossRef
Risk factors and intervention of caregiver burden in Parkinson’s disease: a systematic review and meta-analysis
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Impact of advanced Parkinson’s disease on caregivers: an international real-world study
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