Abstract

Background:

Parkinson’s disease (PD) is a neurodegenerative condition with a diverse and complex pattern of motor and non-motor symptoms which change over time with disease duration.

Objective:

The aims of the present study were to discover what symptoms matter most to people with the condition and to examine how these priorities change with disease duration.

Methods:

A simple free-text online survey (using SmartSurvey) was developed by Parkinson’s UK, which asked participants to identify up to three aspects of the condition they would most like to see improvement in.

Results:

790 people participated reporting 2,295 issues related to PD which were grouped into 24 broad symptom domains. Of these, 1,358 (59.1%) were categorised as motor symptoms, 859 (37.4%) as non-motor issues and 78 (3.4%) as medication problems. This study reveals how certain features of PD become more or less important to patients as the condition progresses. Non-motor symptoms were highly cited from the very earliest stages of PD. Problems with walking, balance and falls, speech problems, freezing and dyskinesia become increasingly important as the condition progresses whereas tremor, stiffness and psychological health become decreasingly important as the condition progresses.

Conclusions:

The data suggest that the priorities of people affected by PD for improving life are personal and change with duration of the condition. These findings have implications for developing person-centred management and care, as well as for directing future research to improve quality of life.

中文翻译：

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帕金森病患者：他们最想改善哪些症状以及这种情况如何随着疾病持续时间而变化？

摘要

背景：

帕金森病 (PD) 是一种神经退行性疾病，具有多种复杂的运动和非运动症状模式，这些症状会随着疾病持续时间而变化。

客观的：

本研究的目的是发现哪些症状对患有这种疾病的人最重要，并检查这些优先级如何随着疾病持续时间而变化。

方法：

帕金森英国开发了一个简单的自由文本在线调查（使用 SmartSurvey），要求参与者确定他们最希望看到改善的状况的三个方面。

结果：

790 人参与报告了 2,295 个与 PD 相关的问题，这些问题分为 24 个广泛的症状领域。其中，1,358 人 (59.1%) 被归类为运动症状，859 人 (37.4%) 被归类为非运动问题，78 人 (3.4%) 被归类为药物问题。这项研究揭示了随着病情的进展，PD 的某些特征如何对患者变得或多或少重要。非运动症状从 PD 的最早阶段就被高度引用。随着病情的进展，行走、平衡和跌倒、言语问题、冻结和运动障碍等问题变得越来越重要，而随着病情的进展，震颤、僵硬和心理健康变得越来越重要。

结论：

数据表明，受 PD 影响的人改善生活的优先事项是个人的，并且随着病情的持续时间而变化。这些发现对发展以人为本的管理和护理以及指导未来研究以提高生活质量具有重要意义。