韩国帕金森病患者及其照料者的负担
Patients and Their Caregivers' Burdens for Parkinson's Disease in Korea.
作者信息
Baik Jong Sam, Kim Joong-Seok, Koh Seong-Beom, Cho Jin Whan, Lee Phil Hyu, Ma Hyeo-Il, Kim Yun Joong, Ahn Tae-Beom, Kim Sang Jin, Kim Yong Duk, Choi Seong-Min, Lee Ho-Won, Kim Hee Tae
机构信息
Department of Neurology, Sanggye Paik Hospital, Inje University College of Medicine, Seoul, Korea.
Department of Neurology, College of Medicine, The Catholic University of Korea, Seoul, Korea.
出版信息
J Mov Disord. 2017 Sep;10(3):109-115. doi: 10.14802/jmd.17053. Epub 2017 Sep 22.
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.
目的
许多帕金森病（PD）患者存在运动和非运动症状。根据PD的这些多样症状，患者或其照料者的生活质量低于其他神经退行性疾病患者。由于所有患者面临的困难各不相同，因此在所有病例中对其困难进行优先级排序也有所不同。本研究的目的是调查PD患者及其照料者的负担，并确定需要政府援助的领域。
方法
我们通过面对面问卷调查了PD患者及其照料者对PD的认知和看法。问卷分为三个部分：PD症状（A部分）、政策需求（B部分）以及照料者面临的困难（C部分）。A部分包含8个问题，B部分有2个问题，C部分有3个问题。
结果
本研究共纳入853名受试者（702名患者和151名照料者）。PD患者经历的主要困难包括身体方面（67%）、精神方面（60%）和社会经济方面（52%）。在评估身体困难时，超过一半的患者经历了严重困难（29%非常严重，39%严重）。患者中精神困难被评估为严重（35%）和非常严重（21%）。社会经济方面也存在严重困难，患者中有52%，照料者中有49%，尤其是五十多岁的患者（58%）以及配偶为照料者的患者（65%）。最迫切的需求是引入治疗PD的新技术（62%），其次是减轻治疗费用（38%）和家庭支持系统（31%）。大多数（91%）患者在症状出现后两年内被诊断为PD。
结论
我们知道，PD患者和照料者面临的困难以及对政府援助的需求存在差异。这些结果强调，尽早了解患者和照料者的困难和需求有助于预防和减轻疾病负担。
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