Journal of Movement Disorders

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

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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

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Abstract PDF Supplementary 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

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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

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