Klietz Martin, Berndt Johanna M, Wegner Florian, Schneider Nils, Höglinger Günter U, Eggers Carsten, Stiel Stephanie
Department of Neurology, Hannover Medical School, Carl-Neuberg-Straße 1, 30625 Hannover, Germany.
Institute for General Practice, Hannover Medical School, Carl-Neuberg-Straße 1, 30625 Hannover, Germany.
J Clin Med. 2020 Feb 6;9(2):449. doi: 10.3390/jcm9020449.
A huge proportion of people with Parkinson's disease (PwP) in Germany have written an advance directive (AD). However, the content of these forms in regard to specific Parkinson's disease (PD)-related complications is rather low. There is an urgent need to specify ADs of PwP and consequently to improve decision-making concerning end-of-life aspects for affected patients. Evidence- and consensus-based PD-specific recommendations for ADs might help to close this gap. A Delphi study with two online Delphi rounds was initiated. Initial recommendations were built on findings from previous studies and derived from evidence-based literature. Consensus on recommendations was defined as ≥80% concordance regarding clarity of formulated aspects and relevance for clinical practice. A total of 22 experts (15.2% response rate) predominantly from the workgroup 'neuro-palliative care' in Germany performed two Delphi rounds. Consensus was achieved for 14 of 24 initially presented recommendations. Recommendations relating to dopaminergic therapy as well as to non-oral therapy options were considered important by the expert panel. The recommendations should be taken into account when developing and giving advice on ADs for PwP. Health professionals should be trained in counselling ADs of PwP and in integrating these recommendations in ADs during the disease course of PD.
德国很大一部分帕金森病患者(PwP)都撰写了预先医疗指示(AD)。然而,这些表格中关于特定帕金森病(PD)相关并发症的内容相当少。迫切需要明确PwP的AD,并因此改善针对受影响患者临终方面的决策。基于证据和共识的PD特异性AD建议可能有助于填补这一空白。启动了一项包含两轮在线德尔菲法的研究。初步建议基于先前研究的结果,并源自循证文献。建议的共识定义为在表述方面的清晰度和对临床实践的相关性上达成≥80%的一致。共有22位主要来自德国“神经姑息治疗”工作组的专家(回复率为15.2%)进行了两轮德尔菲法。最初提出的24项建议中有14项达成了共识。专家小组认为与多巴胺能治疗以及非口服治疗选择相关的建议很重要。在为PwP制定和提供AD建议时应考虑这些建议。医疗专业人员应接受关于为PwP提供AD咨询以及在PD病程中将这些建议纳入AD的培训。