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Investigation of the Treatment and Living Assistance Needed by Patients with Young-Onset Parkinson's Disease

机译:青年帕金森氏病患者需要治疗和生活协助的调查

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Purpose: This study assessed the symptoms, treatment, social systems use, and perception of living conditions of patients with young-onset Parkinson’s disease (YOPD), and investigated the support needed by them. Method: Among the 252 people who completed our questionnaire, we defined YOPD patients as those diagnosed as young onset or those with onset at ≤40 years. The data were compared with others. Results: There were 24 patients with YOPD (9.5%) (average age: 61.7 years), with an average disease duration 6.4 years longer (p 0.01) and time until diagnosis 0.7 years longer (p 0.1) than those of other patients. This group took 1.6 times more types of medicines, and time to their next appointment was 8.6 days shorter than that of other patients (p 0.05). Patients with YOPD had more pulsive walking and more sweating (p 0.05), and more motor fluctuation (p 0.1). More patients with YOPD had a physical disability certificate but felt they were not obtaining the required services (p 0.05). 45.0% of the YOPD group wanted to work more, more used information and communication equipment (p 0.05), and more felt their medications were adequate (p 0.1). Conclusions: Increased awareness of YOPD is needed. YOPD patients have motor fluctuation because of the longer disease duration. Thus, the support of doctors and nurses, and frequent examination visits, are indispensable for controlling symptoms to achieve middle age developmental tasks. Increased support for care-giving, leisure-time activities, and work is also necessary and may help maintain the desire to work in this group.
机译:目的:本研究评估了年轻帕金森病(YOPD)患者的症状,治疗,社会系统使用和生活状况感知,并调查了他们所需要的支持。方法:在完成问卷的252人中,我们将YOPD患者定义为被诊断为年轻发作或≤40岁的患者。将数据与其他数据进行比较。结果:YOPD患者24例(9.5%)(平均年龄:61.7岁),平均疾病持续时间比其他患者长6.4年(p <0.01),直到诊断的时间长0.7年(p <0.1) 。该组患者使用的药物种类增加了1.6倍,而下一次预约的时间比其他患者缩短了8.6天(p <0.05)。 YOPD患者的搏动步行较多,出汗较多(p <0.05),运动波动较大(p <0.1)。越来越多的YOPD患者获得了身体残疾证明,但他们却没有获得所需的服务(p <0.05)。 YOPD组中有45.0%的人希望工作更多,使用更多的信息和通讯设备(p <0.05),并且更多的人认为自己的药物足够(p <0.1)。结论:需要提高对YOPD的认识。由于疾病持续时间较长,YOPD患者有运动波动。因此,医生和护士的支持以及频繁的检查访问对于控制症状以实现中年发育任务是必不可少的。也有必要增加对护理,休闲活动和工作的支持,这可能有助于维持在该小组工作的愿望。

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