当被诊断患有帕金森病时,观察和患者感知信息的提供
Elisabeth Kurpershoek1,2, Marij A Hillen2, Mark H B Huisman3
1Department of Neurology, Amsterdam Neuroscience, Neurodegeneration, Amsterdam UMC, Location University of Amsterdam, Amsterdam, the Netherlands.
患有帕金森病 (PD) 的患者经常觉得他们没有得到足够的关于他们的病情的信息. 虽然临床医生专注于治疗,但许多患者希望了解更多关于疾病未来发展过程的细节.
科学领域:
- 神经学 神经学
- 患者信息传播 患者信息传播
- 卫生沟通健康沟通
背景情况:
- 被诊断为帕金森病 (PD) 的患者经常报告疾病特异性信息不足.
- 患者感知到的信息需求与临床医生报告的信息提供之间存在差异.
研究的目的:
- 分析临床医生在帕金森病诊断咨询期间提供的信息.
- 调查提供的信息与患者特征,信息需求和满意度之间的关系.
主要方法:
- 用记录的咨询和问卷进行前性观察纵向研究.
- 对咨询记录进行信息内容和持续时间的系统编码.
- 评估患者和伴侣的信息偏好,感知信息和满意度.
主要成果:
- 咨询平均为48分钟,其中12分钟用于提供信息,主要是关于治疗.
- 提供的信息与患者高信息偏好没有相关性.
- 患者和伴侣认为信息中等 (2.8/5) 和中等满意 (3.4/5).
结论:
- 临床医生主要在帕金森病诊断期间提供与治疗有关的信息.
- 很大一部分患者希望了解更多关于帕金森病未来影响的信息.
- 目前的信息传递并不完全满足所有帕金森病患者的面向未来的信息需求.
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