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帕金森难题盒。

The Parkinson's Puzzle Box.

机构信息

Yorkshire, UK.

Wicking Dementia Research and Education Centre, University of Tasmania, Hobart, Tasmania, Australia.

出版信息

Health Expect. 2024 Jun;27(3):e14116. doi: 10.1111/hex.14116.

Abstract

INTRODUCTION

Women and those with younger onset Parkinson's Disease (YOPD) are typically diagnosed later and face unique situations and challenges. This essay aims to raise awareness of the difficulties in diagnosing YOPD and the need for a personalised approach to care for women with YOPD.

METHODS

Two professional women with YOPD (academic physiotherapist and practicing dentist) and a female neurologist (clinician academic) came together to write a narrative essay on their personal experience and perspectives in relation to women and YOPD.

RESULTS

The essay outlines how the experience of diagnosis is likened to a complex puzzle box with many interlocking components that are hidden and difficult to solve. The concerns of the women about their identity, work, family and the future, with most supports targeting those that are older and retired are outlined.

CONCLUSION

It is concluded that YOPD is a complex puzzle to solve, but can be done by understanding all the intricate interlocking components of the puzzle and combined with greater awareness could lead to earlier diagnosis and the delivery of successful person-centred care.

PATIENT OR PUBLIC CONTRIBUTION

People with lived experience were involved in the essay conception and writing.

摘要

简介

女性和年轻起病帕金森病(YOPD)患者通常诊断较晚,面临独特的情况和挑战。本文旨在提高对 YOPD 诊断困难的认识,并呼吁为 YOPD 女性患者提供个性化的护理方法。

方法

两位 YOPD 女性患者(学术理疗师和执业牙医)和一位女性神经科医生(临床学术专家)共同撰写了一篇叙事性文章,阐述了她们在女性和 YOPD 方面的个人经历和观点。

结果

本文概述了诊断过程就像一个复杂的拼图游戏,有许多相互关联的部分隐藏其中,难以解决。女性患者对自己的身份、工作、家庭和未来的担忧也被提及,而大多数支持措施都针对那些年龄较大和已经退休的人。

结论

YOPD 是一个复杂的拼图,需要理解拼图的所有复杂相互关联的部分,并且提高认识,这可能会导致更早的诊断和成功的以患者为中心的护理。

患者或公众贡献

有实际生活经验的人参与了文章的构思和撰写。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/eeb5/11187917/50367e4a386c/HEX-27-e14116-g001.jpg

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