Hertie Institute for Clinical Brain Research, Department of Neurodegeneration, Center of Neurology, University of Tuebingen, Tuebingen, Germany.
DZNE, German Center for Neurodegenerative Diseases, Tuebingen, Germany.
J Parkinsons Dis. 2016 Mar 10;6(2):279-87. doi: 10.3233/JPD-150740.
In this viewpoint, we discuss how several aspects of Parkinson's disease (PD) - known to be correlated with wellbeing and health-related quality of life-could be measured using wearable devices ('wearables'). Moreover, three people with PD (PwP) having exhaustive experience with using such devices write about their personal understanding of wellbeing and health-related quality of life, building a bridge between the true needs defined by PwP and the available methods of data collection. Rapidly evolving new technologies develop wearables that probe function and behaviour in domestic environments of people with chronic conditions such as PD and have the potential to serve their needs. Gathered data can serve to inform patient-driven management changes, enabling greater control by PwP and enhancing likelihood of improvements in wellbeing and health-related quality of life. Data can also be used to quantify wellbeing and health-related quality of life. Additionally these techniques can uncover novel more sensitive and more ecologically valid disease-related endpoints. Active involvement of PwP in data collection and interpretation stands to provide personally and clinically meaningful endpoints and milestones to inform advances in research and relevance of translational efforts in PD.
在这篇观点文章中,我们讨论了可穿戴设备如何用于测量帕金森病(PD)的几个方面(已知这些方面与幸福感和健康相关的生活质量相关)。此外,三位使用过此类设备的 PD 患者(PwP)详细介绍了他们对幸福感和健康相关生活质量的个人理解,在 PwP 定义的真实需求与现有的数据收集方法之间架起了桥梁。快速发展的新技术开发出了可在 PD 等慢性病患者的家庭环境中探测功能和行为的可穿戴设备,有可能满足他们的需求。收集到的数据可用于告知以患者为驱动的管理变更,使 PwP 能够更好地控制病情,并提高幸福感和健康相关生活质量的改善几率。这些技术还可以用于量化幸福感和健康相关的生活质量。此外,这些技术可以揭示新的、更敏感和更符合生态的与疾病相关的终点。让 PwP 积极参与数据收集和解释,将为研究进展和 PD 转化研究的相关性提供有个人意义和临床意义的终点和里程碑。