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用于帕金森病运动功能和生活质量自我评估的无线实时电子数据采集

Wireless real-time electronic data capture for self-assessment of motor function and quality of life in Parkinson's disease.

作者信息

Nyholm Dag, Kowalski Jan, Aquilonius Sten-Magnus

机构信息

Department of Neuroscience, Neurology, Uppsala University Hospital, Uppsala, Sweden.

出版信息

Mov Disord. 2004 Apr;19(4):446-51. doi: 10.1002/mds.10690.

Abstract

Frequent assessment of the symptoms in Parkinson's disease (PD) is important in both clinical and experimental settings, especially when motor fluctuations are present. Patient diaries are increasingly used in studies, allowing patients to stay in their home environments. However, traditional paper diaries may not reflect reality because of a lack in compliance or retrospective data entries. This study presents a comparison between paper diaries and a new method, real-time data capture with a hand-held computer (electronic diary). Twenty patients with PD diagnosed at least 5 years previously were randomly assigned to use either a paper diary or an electronic diary on 8 days during 1 month. Questions were answered every 2 hours over a 12-hour period on each day. Median compliance was 88% with the electronic diary and 98% with the paper diary, although strict compliance to the scheduled times by patients using the paper diary was 78%. Neither age nor earlier experience with computers affected the patient's ability to use the electronic diary. Electronic diaries can be used for self-assessment of PD symptoms. The real-time feature provides fast access to clean data with knowledge of true compliance.

摘要

在帕金森病(PD)的临床和实验环境中,频繁评估症状都很重要,尤其是在出现运动波动的情况下。患者日记在研究中的使用越来越多,使患者能够在家庭环境中进行记录。然而,传统的纸质日记可能无法反映实际情况,因为存在依从性不足或回顾性数据录入的问题。本研究对纸质日记和一种新方法——使用手持计算机进行实时数据采集(电子日记)进行了比较。20名至少在5年前被诊断为帕金森病的患者在1个月内随机分配在8天使用纸质日记或电子日记。每天在12小时内每2小时回答一次问题。电子日记的中位依从率为88%,纸质日记为98%,尽管使用纸质日记的患者严格按照预定时间记录的比例为78%。年龄和以前使用计算机的经验都不会影响患者使用电子日记的能力。电子日记可用于帕金森病症状的自我评估。实时功能可快速获取准确的清洁数据,并了解真实的依从情况。

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