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帕金森病患者的心声。

The Voice of the Parkinson Customer.

机构信息

Scientific Institute for Quality of Healthcare, Radboud Institute for Health Sciences, Radboud university medical center, Nijmegen, The Netherlands.

Department of Neurology, Radboud university medical center, Nijmegen, The Netherlands.

出版信息

J Parkinsons Dis. 2019;9(1):197-201. doi: 10.3233/JPD-181431.

Abstract

BACKGROUND AND OBJECTIVES

To improve the care for patients with chronic neurological conditions like Parkinson's disease, identifying the core needs of patients is crucial. In this article, we present the Voice of the Customer approach (originally developed in the field of industry to probe the clients' needs), a novel methodology to identify these needs.

METHODS

A group of 12 discussants carried out in depth interviews to patients (n = 20), relatives (n = 12) and healthcare professionals (n = 11). The interviewers combined the most informative quotations into a comprehensive video, which was used as feedback to the interviewees. The interviewees then identified the most important needs in a consensus meeting.

RESULTS AND CONCLUSIONS

The approach revealed that patients were more concerned about the impact of Parkinson's disease on their daily lives than about the bio-medical aspects of the disease. Their top unmet needs were: (1) more self management; (2) better interdisciplinary collaboration between different healthcare professionals; (3) more time to discuss the future and possible scenarios; and (4) a healthcare professional acting as a single point of access, acting as personal case manager, either to solve problems directly or to direct patients to the professional best equipped to address the problem at hand. These results can now be used to further optimize the care for patients with Parkinson's disease.

摘要

背景与目的

为了改善对帕金森病等慢性神经疾病患者的护理,确定患者的核心需求至关重要。本文介绍了客户之声方法(最初在工业领域开发,用于探究客户需求),这是一种识别这些需求的新方法。

方法

一组 12 名讨论者对 20 名患者、12 名亲属和 11 名医疗保健专业人员进行了深入访谈。访谈者将最具信息量的引语合并到一个综合视频中,作为对受访者的反馈。然后,受访者在一次共识会议上确定了最重要的需求。

结果与结论

该方法表明,患者更关注帕金森病对日常生活的影响,而不是疾病的生物医学方面。他们最未满足的需求是:(1)更多的自我管理;(2)不同医疗保健专业人员之间更好的跨学科合作;(3)更多时间讨论未来和可能的情况;(4)医疗保健专业人员充当单一联系点,充当个人病例经理,直接解决问题或指导患者到最有能力解决手头问题的专业人员。这些结果现在可以用于进一步优化帕金森病患者的护理。

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