Parkinson's UK, London, UK.
Research Support Network, London, UK.
J Parkinsons Dis. 2021;11(2):715-724. doi: 10.3233/JPD-202346.
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.
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.
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.
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.
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.
帕金森病（PD）是一种神经退行性疾病，其运动和非运动症状具有多样化且复杂的模式，且随着疾病的进展而随时间变化。
本研究旨在发现对患有该疾病的人最重要的症状，并研究这些优先级如何随疾病的进展而变化。
帕金森病英国协会（Parkinson's UK）开发了一个简单的在线自由文本调查（使用 SmartSurvey），要求参与者最多选择三个他们希望看到改善的疾病方面。
790 人参与了研究，报告了与 PD 相关的 2295 个问题，这些问题被分为 24 个广泛的症状领域。其中，1358 个（59.1%）被归类为运动症状，859 个（37.4%）为非运动问题，78 个（3.4%）为药物问题。本研究揭示了随着疾病的进展，某些 PD 特征对患者的重要性如何变化。非运动症状在 PD 的早期阶段就被高度引用。随着疾病的进展，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，而震颤、僵硬和心理健康等问题变得越来越不重要。
这些数据表明，受 PD 影响的人的生活改善重点是个人的，且随着疾病的进展而变化。这些发现对开发以患者为中心的管理和护理具有影响，也为指导未来改善生活质量的研究提供了方向。
