Department of Neurology, University of Florida College of Medicine, Gainesville, Florida, United States of America.
Morton and Gloria Shulman Movement Disorders Centre and the Edmond J Safra Program in Parkinson's Research, Toronto Western Hospital, Toronto, Ontario, Canada.
PLoS One. 2019 Apr 18;14(4):e0215384. doi: 10.1371/journal.pone.0215384. eCollection 2019.
Successful patient-physician communication is critical for improving health outcomes, but research regarding optimal communication practices in Parkinson's disease is limited. The objective of the current study was to investigate barriers and facilitators of communication between persons with Parkinson's disease, carepartners, and physicians, specifically in the setting of off periods, with the goal of identifying ways to improve patient-carepartner-physician communication.
We interviewed persons with Parkinson's, carepartners, and physicians (specialists and non-specialists) using a semi-structured questionnaire to identify and describe experiences, barriers, and facilitators relating to communication about off periods in Parkinson's disease. We used a qualitative descriptive approach to analyze interview transcripts and compare themes between participating groups.
Twenty persons with Parkinson's and their carepartners and 20 physicians (10 specialists, 10 non-specialists) participated in interviews. Identified communication barriers included patient-level (e.g. cognitive impairment, reluctance to discuss symptoms), caregiver-level (e.g. caregiver absence), and physician-level (e.g. distraction by technology, lack of appreciation of the burden of off periods) factors. Other barriers included the challenging nature of off periods themselves. Positive physician characteristics such as empathy, respect, and taking time to listen were major facilitators of communication regarding off periods. Persons with Parkinson's, carepartners, and physicians described using various tools (e.g. home diaries, questionnaires, mobile phone videos) to aid communication regarding off periods but participants identified a need for more formal educational materials.
Physicians caring for persons with Parkinson's can improve communication through more patient-centered practice but there is a need for improved educational tools regarding off periods. Further research is needed to identify optimal strategies for communication about off periods and preferred approaches for off period education.
成功的医患沟通对于改善健康结果至关重要，但帕金森病的最佳沟通实践研究有限。本研究的目的是调查帕金森病患者、照护者和医生之间沟通的障碍和促进因素，特别是在发作间期，以确定改善医患沟通的方法。
我们使用半结构化问卷对帕金森病患者、照护者和医生（专家和非专家）进行了访谈，以确定和描述与帕金森病发作间期沟通相关的经历、障碍和促进因素。我们采用定性描述方法对访谈记录进行分析，并比较参与组之间的主题。
20 名帕金森病患者及其照护者和 20 名医生（10 名专家，10 名非专家）参与了访谈。确定的沟通障碍包括患者层面（例如认知障碍、不愿讨论症状）、照护者层面（例如照护者缺席）和医生层面（例如被技术分心、缺乏对发作间期负担的认识）因素。其他障碍包括发作间期本身的挑战性性质。积极的医生特征，如同理心、尊重和花时间倾听，是发作间期沟通的主要促进因素。帕金森病患者、照护者和医生描述了使用各种工具（例如家庭日记、问卷、手机视频）来帮助发作间期的沟通，但参与者认为需要更多的正式教育材料。
照顾帕金森病患者的医生可以通过更以患者为中心的实践来改善沟通，但需要改进关于发作间期的教育工具。需要进一步研究以确定发作间期沟通的最佳策略和发作间期教育的首选方法。
