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JMD : Journal of Movement Disorders

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Original Articles
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
  • 7,103 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
  • Group singing improves quality of life for people with Parkinson’s: an international study
    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
Nationwide Survey of Patient Knowledge and Attitudes towards Human Experimentation Using Stem Cells or Bee Venom Acupuncture for Parkinson’s Disease
Sun Ju Chung, Seong Beom Koh, Young-Su Ju, Jae Woo Kim
J Mov Disord. 2014;7(2):84-91.   Published online October 30, 2014
DOI: https://doi.org/10.14802/jmd.14012
  • 16,834 View
  • 87 Download
  • 8 Web of Science
  • 8 Crossref
AbstractAbstract PDFSupplementary Material
Objective Stem cell treatment is a well-recognized experimental treatment among patients with Parkinson’s disease (PD), for which there are high expectations of a positive impact. Acupuncture with bee venom is one of the most popular complementary and alternative treatments for PD. Patient knowledge and attitudes towards these experimental treatments are unknown.
Methods Using a 12-item questionnaire, a nationwide survey was conducted of 963 PD patients and 267 caregivers in 44 Korean Movement Disorders Society member hospitals from April 2013 to June 2013. The survey was performed by trained interviewers using conventional methods.
Results Regarding questions on experimental treatments using stem cells or bee venom acupuncture, 5.1–17.7% of PD patients answered questions on safety, efficacy, and evidence-based practice incorrectly; however, more than half responded that they did not know the correct answer. Although safety and efficacy have not been established, 55.5% of PD patients responded that they were willing to receive stem cell treatment. With regard to participating in experimental treatments, there was a strong correlation between stem cell treatment and bee venom acupuncture (p < 0.0001, odds ratio = 5.226, 95% confidence interval 3.919–6.969). Younger age, higher education, and a longer duration of PD were all associated with a correct understanding of experimental treatments.
Conclusions Our data suggest that relatively few PD patients correctly understand the safety and efficacy of experimental treatments and that PD patients are greatly interested in new treatments. We hope that our data will be used to educate or to plan educational programs for PD patients and caregivers.

Citations

Citations to this article as recorded by  
  • Knowledge, Attitude, and Practice of Bee Venom Acupuncture Therapy on Rheumatoid Arthritis Among Patients in Saudi Arabia
    Shahd E Sharaf, Safaa Alsanosi, Abdullah R Alzahrani, Saeed S Al-Ghamdi, Sharaf E Sharaf, Nahla Ayoub
    International Journal of General Medicine.2022; Volume 15: 1171.     CrossRef
  • Comparison of Patient and Expert Perceptions of the Attainment of Research Milestones in Parkinson's Disease
    Patrick Bodilly Kane, Daniel M. Benjamin, Roger A. Barker, Anthony E. Lang, Todd Sherer, Jonathan Kimmelman
    Movement Disorders.2021; 36(1): 171.     CrossRef
  • A scoping review of patient and public perspectives on cell and gene therapies
    Karen Macpherson, Olalekan Lee Aiyegbusi, Lauren Elston, Susan Myles, Jennifer Washington, Nisha Sungum, Mark Briggs, Philip Newsome, Melanie Calvert
    Regenerative Medicine.2021; 16(11): 1005.     CrossRef
  • Clinical Applications of Bee Venom Acupoint Injection
    Ting-Yen Lin, Ching-Liang Hsieh
    Toxins.2020; 12(10): 618.     CrossRef
  • Patient and public perspectives on cell and gene therapies: a systematic review
    Olalekan Lee Aiyegbusi, Karen Macpherson, Lauren Elston, Susan Myles, Jennifer Washington, Nisha Sungum, Mark Briggs, Philip N. Newsome, Melanie J. Calvert
    Nature Communications.2020;[Epub]     CrossRef
  • Knowledge, attitudes and perceptions of Parkinson's disease: A cross-sectional survey of Asian patients
    Onanong Jitkritsadakul, Nonglak Boonrod, Roongroj Bhidayasiri
    Journal of the Neurological Sciences.2017; 374: 69.     CrossRef
  • Attitudes to Stem Cell Therapy Among Ischemic Stroke Survivors in the Lund Stroke Recovery Study
    Joseph Aked, Hossein Delavaran, Olle Lindvall, Bo Norrving, Zaal Kokaia, Arne Lindgren
    Stem Cells and Development.2017; 26(8): 566.     CrossRef
  • Professional ethics in complementary and alternative medicines in management of Parkinson’s disease
    Hee Jin Kim, Beomseok Jeon, Sun Ju Chung
    Journal of Parkinson's Disease.2016; 6(4): 675.     CrossRef

JMD : Journal of Movement Disorders