Nijhuis Frouke A P, van den Heuvel Lieneke, Bloem Bastiaan R, Post Bart, Meinders Marjan J
Department of Neurology, Canisius Wilhelmina Hospital, Nijmegen, Netherlands.
Department of Neurology, Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Nijmegen, Netherlands.
Front Neurol. 2019 Aug 16;10:896. doi: 10.3389/fneur.2019.00896. eCollection 2019.
Choosing between deep brain stimulation (DBS), Levodopa-Carbidopa intestinal gel (LCIG), or continuous subcutaneous Apomorphine infusion (CSAI) in advanced Parkinson's disease is a complex decision. It is paramount to combine evidence with the professional's expertise and the patient's preferences. The patient's preferences can be elicited and integrated into the treatment choice through shared decision-making (SDM). In this cross-sectional survey study we explored patient's involvement in decision-making and identified facilitators and barriers for shared decision-making (SDM) in advanced Parkinson from the patient's perspective. We invited 180 Dutch persons with Parkinson who started DBS, LCIG, or CSAI in the previous 3 years to complete a questionnaire. Questions covered three topics; (1) preferred and experienced roles in the decision process for an advanced treatment, (2) information needs to make a decision and actually received information, and (3) factors that had positively or negatively influenced shared decision-making (SDM). One hundred and twenty one participants completed the questionnaire. The large majority preferred to be involved in the decision-making (93%), and most respondents had experienced an active role (85%). In about half of the respondents (47%), their preferred role did not match their experienced role; 28% had a more active role than they would have preferred. Although 77% perceived to be fully informed at the time of decision, only 41% stated they knew all three therapeutic options. Participants identified the most important facilitators for shared decision-making (SDM) at the patient's level (i.e., perceiving the decision to be his own choice), at the neurologist's level (i.e., having expertise on all treatment options, and taking time for the decision), and within the professional-patient relationship (i.e., trust and having an open discussion). The main barriers for shared decision-making (SDM) existed at the patient's level (i.e., perceiving there is no choice), neurologist's level (own treatment preference), and organizational level (i.e., no research available that compares treatments, multiple professionals involved, and lack of consultation time). Patients want to be involved and feel involved when choosing an advanced treatment, but often do not know all treatment options. Implementation of true patient involvement needs personalized information provision on all treatment options and improvement on how this information is communicated.
在晚期帕金森病中，选择脑深部电刺激（DBS）、左旋多巴 - 卡比多巴肠凝胶（LCIG）或持续皮下注射阿扑吗啡（CSAI）是一个复杂的决定。将证据与专业人员的专业知识以及患者的偏好相结合至关重要。通过共同决策（SDM），可以了解患者的偏好并将其纳入治疗选择。在这项横断面调查研究中，我们从患者的角度探讨了患者在决策中的参与情况，并确定了晚期帕金森病患者共同决策（SDM）的促进因素和障碍。我们邀请了180名在过去3年中开始接受DBS、LCIG或CSAI治疗的荷兰帕金森病患者填写问卷。问题涵盖三个主题：（1）在晚期治疗决策过程中偏好和实际扮演的角色；（2）做出决策所需的信息以及实际获得的信息；（3）对共同决策（SDM）产生积极或消极影响的因素。121名参与者完成了问卷。绝大多数人希望参与决策（93%），大多数受访者都扮演了积极的角色（85%）。在大约一半的受访者（47%）中，他们偏好的角色与实际扮演的角色不匹配；28%的人扮演的角色比他们希望的更积极。尽管77%的人认为在决策时已充分了解信息，但只有41%的人表示他们知道所有三种治疗选择。参与者确定了患者层面（即认为决策是自己的选择）、神经科医生层面（即对所有治疗选择有专业知识，并为决策留出时间）以及医患关系层面（即信任和进行开放讨论）共同决策（SDM）的最重要促进因素。共同决策（SDM）的主要障碍存在于患者层面（即认为没有选择）、神经科医生层面（自身的治疗偏好）和组织层面（即没有比较治疗方法的研究、涉及多个专业人员以及缺乏咨询时间）。患者在选择晚期治疗时希望参与并感觉自己参与其中，但往往并不了解所有治疗选择。真正实现患者参与需要提供关于所有治疗选择的个性化信息，并改善信息的传达方式。
