Chulalongkorn Centre of Excellence for Parkinson's Disease and Related Disorders, Department of Medicine, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society, Bangkok, 10330, Thailand.
Chulalongkorn Centre of Excellence for Parkinson's Disease and Related Disorders, Department of Medicine, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society, Bangkok, 10330, Thailand.
Parkinsonism Relat Disord. 2020 Mar;72:82-87. doi: 10.1016/j.parkreldis.2020.02.013. Epub 2020 Feb 27.
An international panel of movement disorders specialists explored the views and perceptions of people with Parkinson's disease (PD) about their condition and its treatment, including the potential mismatch between the clinician's view of the patient's condition and their own view of what aspects of the disease most affect their daily lives. The initiative was focused on Asian countries, so participants comprised experts in the management of PD from key centers in Asia, with additional insight provided by European and the North American movement disorders experts. Analysis of peer-reviewed publications on patient perceptions of PD and the factors that they consider important to their wellbeing identified several contributing factors to the mismatch of views, including gaps in knowledge of PD and its treatment, an understanding of the clinical heterogeneity of PD, and the importance of a multidisciplinary approach to patient care. The faculty proposed options to bridge these gaps to ensure that PD patients receive the personalized treatment they need to achieve the best possible outcomes. It was considered essential to improve patient knowledge about PD and its treatment, as well as increasing the awareness of clinicians of PD heterogeneity in presentation and treatment response. A multidisciplinary and shared-care approach to PD was needed alongside the use of patient-centered outcome measures in clinical trials and clinical practice to better capture the patient experience and improve the delivery of individualized therapy.
一个国际运动障碍专家小组探讨了帕金森病（PD）患者对自身病情及其治疗的看法和认知，包括临床医生对患者病情的看法与患者自身对疾病哪些方面最影响日常生活的看法之间潜在的不匹配。该倡议主要关注亚洲国家，因此参与者包括亚洲主要中心 PD 管理方面的专家，同时还得到了欧洲和北美运动障碍专家的补充意见。对关于患者对 PD 的看法以及他们认为对自身健康重要的因素的同行评议文献的分析确定了导致观点不匹配的几个因素，包括对 PD 及其治疗的认识差距、对 PD 临床异质性的理解，以及对患者护理多学科方法的重视。该小组提出了一些选择方案来弥合这些差距，以确保 PD 患者接受他们需要的个性化治疗，从而获得最佳的治疗效果。改善患者对 PD 及其治疗的了解，以及提高临床医生对 PD 表现和治疗反应异质性的认识被认为是至关重要的。需要采用多学科和共同护理的 PD 方法，同时在临床试验和临床实践中使用以患者为中心的结果衡量标准，以更好地捕捉患者的体验并改善个体化治疗的实施。
