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JMD : Journal of Movement Disorders

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Original Article
Patients and Their Caregivers’ Burdens for Parkinson’s Disease in Korea
Jong Sam Baik, Joong-Seok Kim, Seong-Beom Koh, Jin Whan Cho, Phil Hyu Lee, Hyeo-Il Ma, Yun Joong Kim, Tae-Beom Ahn, Sang Jin Kim, Yong Duk Kim, Seong-min Choi, Ho-Won Lee, Hee Tae Kim
J Mov Disord. 2017;10(3):109-115.   Published online September 22, 2017
DOI: https://doi.org/10.14802/jmd.17053
  • 7,104 View
  • 225 Download
  • 11 Web of Science
  • 11 Crossref
AbstractAbstract PDF
Objective
Many patients with Parkinson’s disease (PD) suffer from motor and non-motor symptoms. According to these variable symptoms of PD, patients or caregivers have a poorer quality of life than patients with other neurodegenerative diseases. Since the difficulties are varied for all patients, prioritizing their difficulties differs among all cases. The goal of this study was to investigate the burdens of PD among the caregivers as well as patients and to identify areas requiring aid from the government.
Methods
We surveyed the awareness and perceptions of PD in patients and caregivers of PD by a face-to-face questionnaire. The questionnaire was divided into three sections: symptoms of PD (part A), desire for policies (part B), and difficulties faced by their caregivers (part C). Part A comprised 8 questions, Part B had 2 questions, and Part C had 3 questions.
Results
In total, 853 subjects (702 patients and 151 caregivers) were enrolled in this study. The major difficulties experienced by PD patients were physical (67%), psychiatric (60%) and socio-economic (52%). Assessing the physical difficulties, more than half the patients experienced severe difficulties (29% very severe, 39% severe). Psychiatric difficulties were assessed as severe (35%) and very severe (21%) among the patients. Severe difficulties were also experienced socio-economically, at 52% in patients and 49% in caregivers, especially among patients in their fifties (58%) and those with their spouse (65%) as caregivers. The topmost need was the introduction of new technology for treatment of PD (62%), followed by relief of costs for treatment (38%) and a family support system (31%). The majority (91%) of the patients were diagnosed with PD within two years after onset of symptoms.
Conclusion
We know that the difficulties of PD and the needs for government assistance are different between patients and caregivers. These results emphasize that perceiving the difficulties and needs of patients and caregivers early can help to prevent and ameliorate the burden of disease.

Citations

Citations to this article as recorded by  
  • Challenges in Parkinson’s Disease Care—In Light of the COVID-19 Pandemic
    Kyung Ah Woo, Han-Joon Kim, Beomseok Jeon
    Journal of Movement Disorders.2023; 16(1): 52.     CrossRef
  • Efficacy and safety of a combination of emotional freedom technique with acupuncture versus acupuncture alone to treat psychiatric symptoms in Parkinson’s disease: A protocol for a randomized, assessor-blind, parallel-group clinical trial
    Dong-Hoon Kang, Ju-Yeon Kim, Yang-Chun Park, Ho-Ryong Yoo, In Chul Jung
    Medicine.2023; 102(21): e33714.     CrossRef
  • Exploring Unmet Information Needs of People with Parkinson’s Disease and Their Families: Focusing on Information Sharing in an Online Patient Community
    Hyeon Sik Chu, Hye Young Jang
    International Journal of Environmental Research and Public Health.2022; 19(5): 2521.     CrossRef
  • Participants' perspective on a COVID-19 online vocal group stimulation for people with Parkinson's disease
    Marie-Christine Hallé, Charline Delorme, Édith Coulombe, Ouswa Rekik, Ingrid Verduyckt
    Frontiers in Rehabilitation Sciences.2022;[Epub]     CrossRef
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    J. Yoon Irons, Grenville Hancox, Trish Vella-Burrows, Eun-Young Han, Hyun-Ju Chong, David Sheffield, Donald E. Stewart
    Aging & Mental Health.2021; 25(4): 650.     CrossRef
  • Exploring the perceptions and stigmatizing experiences of Israeli family caregivers of people with Parkinson's disease
    Hanan AboJabel, Einat Argavan, Sharon Hassin-Baer, Rivka Inzelberg, Perla Werner
    Journal of Aging Studies.2021; 56: 100910.     CrossRef
  • Perceived online social support for Parkinson’s disease patients: The role of support type, uncertainty, contentment, and psychological quality of life
    Surin Chung, Eunjin (Anna) Kim, J. Brian Houston
    Communication Quarterly.2021; 69(3): 259.     CrossRef
  • Delivering patient-centered care in Parkinson's disease: Challenges and consensus from an international panel
    Roongroj Bhidayasiri, Pattamon Panyakaew, Claudia Trenkwalder, Beomseok Jeon, Nobutaka Hattori, Priya Jagota, Yih-Ru Wu, Elena Moro, Shen-Yang Lim, Huifang Shang, Raymond Rosales, Jee-Young Lee, Win Min Thit, Eng-King Tan, Thien Thien Lim, Ngoc Tai Tran,
    Parkinsonism & Related Disorders.2020; 72: 82.     CrossRef
  • Understanding patients’ and caregivers’ perspectives and educational needs in Parkinson’s disease: a multi-ethnic Asian study
    Xing Yan Choo, Shen-Yang Lim, Karuthan Chinna, Yan Jing Tan, Voon Wei Yong, Jia Lun Lim, Kar Foo Lau, Jing Yi Chung, Jun Min Em, Hui Ting Tan, Jia Hwa Lim, Seng Beng Tan, Chong Tin Tan, Ai Huey Tan
    Neurological Sciences.2020; 41(10): 2831.     CrossRef
  • Nörolojik Hastalık ve Evlilik
    Mehmet ÖNGER, Tuba AYDIN
    Sakarya Medical Journal.2020;[Epub]     CrossRef
  • The burden of care and the understanding of disease in Parkinson’s disease
    Geum-Bong Lee, Hyunhee Woo, Su-Yoon Lee, Sang-Myung Cheon, Jae Woo Kim, Oscar Arias-Carrion
    PLOS ONE.2019; 14(5): e0217581.     CrossRef

JMD : Journal of Movement Disorders