TY - JOUR AU - Little, Max AU - Wicks, Paul AU - Vaughan, Timothy AU - Pentland, Alex PY - 2013 DA - 2013/01/24 TI -使用来自互联网社交网络的自我报告症状数据量化帕金森病的短期动态JO - J Med Internet Res SP - e20 VL - 15 IS - 1kw -帕金森病KW -社交网络KW -医疗信息学KW -症状KW -药动力学AB -背景:帕金森病(PD)是一种无法治愈的神经系统疾病，发病率约为0.3%。典型症状是逐渐的运动退化。目前关于疾病进展的科学共识认为，除非治疗，否则症状会随着时间的推移而平稳恶化。关于症状动态的准确信息对于患者、护理人员和科学界设计新的治疗方法、临床决策和个人疾病管理至关重要。长期研究表明，该病的典型病程为早期线性发展，在后期逐渐达到平稳期。然而，持续数天至数周的症状动态仍未量化。目前，关于症状动态的客观临床信息不足3个月，持续数年，但基于互联网的患者自我报告平台可能会改变这一点。目的:评估由关注健康的互联网社会研究平台PatientsLikeMe (PLM)用户记录的在线自我报告帕金森病症状数据的临床价值，在该平台上，患者根据统一帕金森病评分量表(UPDRS)的一个子集定期量化他们的症状。通过分析这些数据，我们的目标是在几年的持续时间内，为短于3个月的评估间隔提供一个关于症状动态本质的科学窗口。 Methods: Online self-reported data was validated against the gold standard Parkinson’s Disease Data and Organizing Center (PD-DOC) database, containing clinical symptom data at intervals greater than 3 months. The data were compared visually using quantile-quantile plots, and numerically using the Kolmogorov-Smirnov test. By using a simple piecewise linear trend estimation algorithm, the PLM data was smoothed to separate random fluctuations from continuous symptom dynamics. Subtracting the trends from the original data revealed random fluctuations in symptom severity. The average magnitude of fluctuations versus time since diagnosis was modeled by using a gamma generalized linear model. Results: Distributions of ages at diagnosis and UPDRS in the PLM and PD-DOC databases were broadly consistent. The PLM patients were systematically younger than the PD-DOC patients and showed increased symptom severity in the PD off state. The average fluctuation in symptoms (UPDRS Parts I and II) was 2.6 points at the time of diagnosis, rising to 5.9 points 16 years after diagnosis. This fluctuation exceeds the estimated minimal and moderate clinically important differences, respectively. Not all patients conformed to the current clinical picture of gradual, smooth changes: many patients had regimes where symptom severity varied in an unpredictable manner, or underwent large rapid changes in an otherwise more stable progression. Conclusions: This information about short-term PD symptom dynamics contributes new scientific understanding about the disease progression, currently very costly to obtain without self-administered Internet-based reporting. This understanding should have implications for the optimization of clinical trials into new treatments and for the choice of treatment decision timescales. SN - 1438-8871 UR - //www.mybigtv.com/2013/1/e20/ UR - https://doi.org/10.2196/jmir.2112 UR - http://www.ncbi.nlm.nih.gov/pubmed/23343503 DO - 10.2196/jmir.2112 ID - info:doi/10.2196/jmir.2112 ER -