Parkinson’s disease (PD) is a progressive neurodegenerative movement disorder with an increased morbidity and mortality. People with PD (PwP) may suffer from decreased quality of life due to various motor and nonmotor symptoms. To a huge proportion, PwP have written an advance directive (AD); however, the content of these forms in regard to PD-specific complications is unclear. The aim of this study was to qualitatively and quantitatively analyze ADs of PwP in Germany. ADs of PwP were analyzed in a German sample of members of the German PD patient association. Participants completed a questionnaire about their AD and sent a copy of their AD to the study center for detailed analyses. ADs were qualitatively and quantitatively analyzed for general and PD-specific aspects and usefulness concerning treatment decisions. 82 PwP were included in the study, and in 76, an AD could be analyzed. Family members, notaries, lawyers, and general physicians mainly counseled writing of the ADs. 4 PwP consulted a neurologist to establish a specific AD for PD. In the analysis, ADs displayed a good specificity for general aspects, but they were unspecific to PD in the vast majority of cases. PwP should be encouraged to create an AD early in their disease and adapt it in the course of the disease. PD-specific aspects for an AD could be details in relation to dopaminergic therapies at the end of life, management of non-oral advanced therapies, neuropsychiatric symptoms, dementia, and swallowing disturbances.

中文翻译：

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对于典型的并发症，德国帕金森氏病患者的预先指示没有明确规定。

帕金森氏病（PD）是一种进行性神经退行性运动障碍，发病率和死亡率均增加。患有PD（PwP）的人可能会因各种运动和非运动症状而生活质量下降。PwP已在很大程度上编写了预先指令（AD）；然而，关于PD特异性并发症的这些形式的内容尚不清楚。这项研究的目的是定性和定量分析德国PwP的AD。在德国PD患者协会成员的德国样本中分析了PwP的AD。参与者完成了有关其AD的问卷调查，并将其AD副本发送给了研究中心以进行详细分析。定性和定量分析ADs的一般和PD特异性方面以及有关治疗决策的有用性。这项研究包括82个PwP，在76年，可以分析AD。家庭成员，公证人，律师和全科医生主要为广告撰写提供咨询。4 PwP咨询了神经科医生，为PD建立了特定的AD。在分析中，AD对一般方面显示出良好的特异性，但在绝大多数情况下，AD对PD没有特异性。应鼓励PwP在疾病早期创建AD，并在疾病过程中对其进行适应。AD的PD特定方面可能是与生命结束时的多巴胺能疗法，非口服高级疗法的管理，神经精神症状，痴呆和吞咽障碍有关的细节。在分析中，AD对一般方面显示出良好的特异性，但在大多数情况下，它们对PD并非特异性。应鼓励PwP在疾病早期创建AD，并在疾病过程中对其进行适应。AD的PD特定方面可能是与生命结束时的多巴胺能疗法，非口服高级疗法的管理，神经精神症状，痴呆和吞咽障碍有关的细节。在分析中，AD对一般方面显示出良好的特异性，但在绝大多数情况下，AD对PD没有特异性。应鼓励PwP在疾病早期创建AD，并在疾病过程中对其进行适应。AD的PD特定方面可能是与生命结束时的多巴胺能疗法，非口服高级疗法的管理，神经精神症状，痴呆和吞咽障碍有关的细节。