Saade Joseph, van Wyk Alice, Stebbins Glenn T, Mestre Tiago A
Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
Division of Neurology, Department of Medicine, Hull Hospital, CISSSO, Gatineau, Quebec, Canada.
Mov Disord Clin Pract. 2025 Jun;12(6):721-733. doi: 10.1002/mdc3.70007. Epub 2025 Mar 3.
The lived experience of Parkinson's disease (PD) includes motor and non-motor symptoms. There is a need to capture the earliest patient experiences in a sensitive and reliable manner for the successful development of interventions that may delay clinical progression in PD.
Our aim was to synthesize published literature about patient-reported symptoms in prodromal and early motor stages of PD and develop a conceptual framework of the earliest lived experiences in PD.
We conducted a scoping review of the published literature in MEDLINE, EMBASE, SCOPUS, and CINAHL databases and abstracted patient-reported symptoms from included studies reporting on prodromal or early motor stages of PD populations.
We included 59 articles with data from 64 cohorts (prodromal PD: n = 20/64; 31%, early motor PD: n = 44/64, 69%). Overall, the 10 most frequent symptoms (of 85 standardized reported symptoms [SRSs]) were non-motor. SRSs were grouped into symptom domains (behavioral, cognition, dysautonomia, motor, sensory, sleep, and others) and functional domains (activities of daily living, communication, sexual, and social impairment). The Movement Disorder Society sponsored revision of the Unified Parkinson's Disease Rating Scale parts Ib and II (n = 13/64, 20%) and ad hoc questionnaires (n = 12/64, 19%) were the most frequently used measurement tools.
At prodromal and early motor stages of PD, individuals report symptoms of a diverse range of motor and non-motor domains and higher-level functional domains. There is a need to capture the full spectrum of this lived experience in a new patient-reported clinical outcome measure for clinical trials in the earliest clinical stages of PD.
帕金森病（PD）的生活体验包括运动和非运动症状。为了成功开发可能延缓PD临床进展的干预措施，需要以敏感且可靠的方式捕捉患者最早出现的症状体验。
我们的目的是综合已发表的关于PD前驱期和运动早期患者报告症状的文献，并构建PD最早生活体验的概念框架。
我们对MEDLINE、EMBASE、SCOPUS和CINAHL数据库中已发表的文献进行了范围综述，并从纳入的关于PD人群前驱期或运动早期的研究中提取患者报告的症状。
我们纳入了59篇文章，数据来自64个队列（前驱期PD：n = 20/64；31%，运动早期PD：n = 44/64，69%）。总体而言，85种标准化报告症状（SRSs）中最常见的10种症状是非运动性的。SRSs被分为症状领域（行为、认知、自主神经功能障碍、运动、感觉、睡眠等）和功能领域（日常生活活动、沟通、性功能和社会功能障碍）。运动障碍协会赞助修订的统一帕金森病评定量表第一部分b和第二部分（n = 13/64，20%）和特设问卷（n = 12/64，19%）是最常用的测量工具。
在PD的前驱期和运动早期，个体报告了各种运动和非运动领域以及更高层次功能领域的症状。有必要在一种新的患者报告临床结局测量方法中捕捉这种完整的生活体验，用于PD最早临床阶段的临床试验。
