Department of Clinical Neurosciences, UCL Institute of Neurology, Royal Free Campus, University College London, London, NW3 2PF, UK.
Centre for Health Services Studies, University of Kent, Canterbury, UK.
J Neurol. 2018 May;265(5):1151-1157. doi: 10.1007/s00415-018-8817-8. Epub 2018 Mar 15.
To report patients' own experiences of receiving a diagnosis of Parkinson's disease (PD) and to identify factors influencing this experience.
A survey by the European Parkinson's Disease Association in 11 European countries.
1775 patients with an average age of 69.7 years participated of whom 54% were male. Those living in rural areas reported having waited longer to seek medical help (p < 0.05). A possible diagnosis of PD was made at the first appointment in a third of respondents. When the diagnosis was made, only 50% reported that the diagnosis was communicated sensitively. 38% of patients reported having been given enough time to ask questions and discuss concerns, but 29% did not. 98% of participants reported having been given information about PD at the time of diagnosis but 36% did not find the information given helpful. Patient satisfaction with the diagnostic consultation was positively associated with more sensitive delivery of diagnosis, the helpfulness and quantity of the information provided and time to ask questions (all p < 0.001). Where diagnosis was given by a specialist, participants reported greater perceived satisfaction with the diagnostic consultation, greater sensitivity of communicating the diagnosis, time to ask questions, provision and helpfulness of information, and earlier medication prescription (all p < 0.0001).
There is a need to improve how the diagnosis of PD is communicated to patients, the opportunity to ask questions soon after diagnosis, and the amount, timing and quality of life information provided, as this is associated with greater satisfaction with the diagnostic process.
报告患者自身接受帕金森病（PD）诊断的体验，并确定影响这种体验的因素。
欧洲帕金森病协会在 11 个欧洲国家进行的一项调查。
共有 1775 名平均年龄为 69.7 岁的患者参与了调查，其中 54%为男性。居住在农村地区的患者报告说他们等待寻求医疗帮助的时间更长（p<0.05）。三分之一的受访者在首次就诊时就可能被诊断为 PD。当做出诊断时，只有 50%的人报告说诊断是敏感地传达的。38%的患者报告说有足够的时间提问和讨论他们的担忧，但 29%的患者没有。98%的参与者报告在诊断时获得了 PD 的信息，但 36%的人认为这些信息没有帮助。患者对诊断咨询的满意度与更敏感地传达诊断、提供的信息的有用性和数量以及提问的时间呈正相关（均 p<0.001）。在由专家进行诊断的情况下，参与者报告说他们对诊断咨询的满意度更高，对诊断的敏感度更高，有更多提问的机会，提供的信息更有用，更早地开出处方（均 p<0.0001）。
需要改进 PD 诊断的沟通方式、在诊断后尽快提问的机会，以及提供的信息量、时机和生活质量信息的质量，因为这与对诊断过程的满意度更高相关。
