J Mov Disord.
2017 Sep;10(3):109-115. 10.14802/jmd.17053.
Patients and Their Caregivers' Burdens for Parkinson's Disease in Korea
- Affiliations
-
- 1Department of Neurology, Sanggye Paik Hospital, Inje University College of Medicine, Seoul, Korea.
- 2Department of Neurology, College of Medicine, The Catholic University of Korea, Seoul, Korea.
- 3Department of Neurology, Korea University Guro Hospital, Korea University College of Medicine, Seoul, Korea.
- 4Department of Neurology and Neuroscience Center, Samsung Medical Center, Sungkyunkwan University School of Medicine, Seoul, Korea.
- 5Department of Neurology, Severance Hospital, Yonsei University College of Medicine, Seoul, Korea.
- 6Department of Neurology, Hallym University College of Medicine, Anyang, Korea.
- 7Department of Neurology, Kyung Hee University College of Medicine, Seoul, Korea.
- 8Department of Neurology, Busan Paik Hospital, Inje University College of Medicine, Busan, Korea.
- 9Department of Neurology, Konyang University College of Medicine, Daejeon, Korea.
- 10Department of Neurology, Chonnam National University College of Medicine, Gwangju, Korea.
- 11Department of Neurology, Kyungpook National University College of Medicine, Daegu, Korea.
- 12Department of Neurology, Hanyang University College of Medicine, Seoul, Korea. kimht@hanyang.ac.kr
- KMID: 2395006
- DOI: http://doi.org/10.14802/jmd.17053
Abstract
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.
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