Hospital Clínic de Barcelona, University of Barcelona, Barcelona, Spain.
Movement Disorders Clinic, Beelitz-Heilstätten, Germany.
J Parkinsons Dis. 2021;11(3):1309-1323. doi: 10.3233/JPD-212611.
A greater understanding of the everyday experiences of people with Parkinson's disease (PD) and their carers may help improve clinical practice.
The Parkinson's Real-world Impact assesSMent (PRISM) study evaluated medication use, health-related quality of life (HRQoL) and the use of healthcare resources by people with PD and their carers.
PRISM is an observational cross-sectional study, in which people with PD and their carers completed an online survey using structured questionnaires, including the Parkinson's Disease Quality of Life Questionnaire (PDQ-39), Non-Motor Symptoms Questionnaire (NMSQuest) and Zarit Burden Interview (ZBI).
Data were collected from 861 people with PD (mean age, 65.0 years; mean disease duration, 7.7 years) and 256 carers from six European countries. People with PD reported a large number of different co-morbidities, non-motor symptoms (mean NMSQuest score, 12.8), and impaired HRQoL (median PDQ-39 summary score, 29.1). Forty-five percent of people with PD reported at least one impulse control behaviour. Treatment patterns varied considerably between different European countries. Levodopa was taken in the last 12 months by 85.9% of participants, and as monotherapy by 21.8%. Carers, who were mostly female (64.8%) and the partner/spouse of the person with PD (82.1%), reported mild to moderate burden (mean ZBI total score, 26.6).
The PRISM study sheds light on the lives of people with PD and those who care for them, re-emphasising the many challenges they face in everyday life. The study also provides insights into the current treatment of PD in Europe.
深入了解帕金森病（PD）患者及其照顾者的日常体验，可能有助于改善临床实践。
帕金森病真实世界影响评估（PRISM）研究评估了 PD 患者及其照顾者的药物使用、健康相关生活质量（HRQoL）和医疗资源利用情况。
PRISM 是一项观察性横断面研究，PD 患者及其照顾者使用结构化问卷在线完成调查，问卷包括帕金森病生活质量问卷（PDQ-39）、非运动症状问卷（NMSQuest）和 Zarit 负担量表（ZBI）。
从 6 个欧洲国家的 861 名 PD 患者（平均年龄 65.0 岁；平均病程 7.7 年）和 256 名照顾者中收集了数据。PD 患者报告了大量不同的合并症、非运动症状（平均 NMSQuest 评分 12.8）和受损的 HRQoL（PDQ-39 综合评分中位数 29.1）。45%的 PD 患者报告至少有一种冲动控制行为。不同欧洲国家之间的治疗模式差异很大。85.9%的参与者在过去 12 个月内服用左旋多巴，21.8%的患者单独服用左旋多巴。照顾者主要为女性（64.8%），是 PD 患者的伴侣/配偶（82.1%），报告存在轻度至中度负担（ZBI 总分平均 26.6）。
PRISM 研究揭示了 PD 患者及其照顾者的生活，再次强调了他们在日常生活中面临的诸多挑战。该研究还深入了解了欧洲目前 PD 的治疗情况。
