Klietz Martin, Öcalan Özlem, Schneider Nils, Dressler Dirk, Stiel Stephanie, Wegner Florian
Department of Neurology, Hannover Medical School, Carl-Neuberg-Str. 1, 30625 Hannover, Germany.
Institute for General Practice, Hannover Medical School, Carl-Neuberg-Str. 1, 30625 Hannover, Germany.
Parkinsons Dis. 2019 Aug 4;2019:2107821. doi: 10.1155/2019/2107821. eCollection 2019.
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.
帕金森病（PD）是一种进行性神经退行性运动障碍，发病率和死亡率都有所增加。帕金森病患者（PwP）可能会因各种运动和非运动症状而生活质量下降。在很大程度上，帕金森病患者已经写下了预先指示（AD）；然而，这些表格中关于帕金森病特定并发症的内容尚不清楚。本研究的目的是对德国帕金森病患者的预先指示进行定性和定量分析。在德国帕金森病患者协会成员的德国样本中分析了帕金森病患者的预先指示。参与者完成了一份关于他们预先指示的问卷，并将其预先指示的副本发送到研究中心进行详细分析。对预先指示进行了定性和定量分析，以了解其一般和帕金森病特定方面以及对治疗决策的有用性。82名帕金森病患者纳入研究，其中76名患者的预先指示可以进行分析。家庭成员、公证人、律师和普通医生主要为预先指示的撰写提供咨询。4名帕金森病患者咨询了神经科医生以制定针对帕金森病的特定预先指示。在分析中，预先指示在一般方面显示出良好的特异性，但在绝大多数情况下，它们对帕金森病并不具有特异性。应鼓励帕金森病患者在疾病早期制定预先指示，并在疾病过程中进行调整。预先指示的帕金森病特定方面可能包括临终时多巴胺能治疗的细节、非口服高级治疗的管理、神经精神症状、痴呆和吞咽障碍。
