Cystic Fibrosis Point of Personalized Detection (CFPOPD): An Interactive Web Application.

Cystic Fibrosis Point of Personalized Detection (CFPOPD): An Interactive Web Application.
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DOI:
10.2196/23530
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发表时间:
2020-12-16
影响因子:
3.2
通讯作者:
Brokamp C
Brokamp C
中科院分区:
医学3区
文献类型:
--
作者:
Wolfe C;Pestian T;Gecili E;Su W;Keogh RH;Pestian JP;Seid M;Diggle PJ;Ziady A;Clancy JP;Grossoehme DH;Szczesniak RD;Brokamp C

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尽管预期寿命稳步增长,囊性纤维化(CF)肺部疾病患者在整个临床过程中仍然经历着肺功能的快速下降,最终可能导致呼吸衰竭。有关快速下降风险的准确和及时信息的护理点工具对于临床决策支持是必不可少的。这项研究的目的是将一种新的算法转化为一个基于Web的交互式应用程序,通过与临床医生的合作开发,该应用程序可以集成到电子健康记录系统中,从而更早、更准确地预测CF患者的快速肺功能下降。我们获得了30,879名CF患者的纵向临床病史、肺功能测量和时间不变特征,这些患者在美国囊性纤维化基金会患者登记处进行了跟踪调查(2003-2015)。我们使用R SHINY框架迭代开发了该应用程序,并与护理人员焦点小组(N=17)进行了定性研究。通过应用程序用户的编码反馈,确定了临床概念模型和4个主题:(1)快速下降中的模糊性,(2)临床实用性,(3)临床意义,(4)特定的建议修订。这些主题被用来将我们的应用程序修改为当前发布的版本,可在网上进行探索。这项研究提高了该应用程序在监测慢性肺疾病患者中的潜在预后作用。进一步的应用程序开发将包括用户要求的其他临床特征,以及对护理人员和家庭互动有用的更模块化的布局。我们用于创建交互式和可视化分析平台的框架支持应用程序的广泛开发,以合成、建模和翻译电子健康数据,从而增强临床决策支持,并改善慢性病和疾病的护理和健康结果。一项前瞻性实施研究是必要的,以评估该工具在增加沟通、加强共享决策和改善CF患者的临床结果方面的有效性。
Despite steady gains in life expectancy, individuals with cystic fibrosis (CF) lung disease still experience rapid pulmonary decline throughout their clinical course, which can ultimately end in respiratory failure. Point-of-care tools for accurate and timely information regarding the risk of rapid decline is essential for clinical decision support. This study aims to translate a novel algorithm for earlier, more accurate prediction of rapid lung function decline in patients with CF into an interactive web-based application that can be integrated within electronic health record systems, via collaborative development with clinicians. Longitudinal clinical history, lung function measurements, and time-invariant characteristics were obtained for 30,879 patients with CF who were followed in the US Cystic Fibrosis Foundation Patient Registry (2003-2015). We iteratively developed the application using the R Shiny framework and by conducting a qualitative study with care provider focus groups (N=17). A clinical conceptual model and 4 themes were identified through coded feedback from application users: (1) ambiguity in rapid decline, (2) clinical utility, (3) clinical significance, and (4) specific suggested revisions. These themes were used to revise our application to the currently released version, available online for exploration. This study has advanced the application’s potential prognostic utility for monitoring individuals with CF lung disease. Further application development will incorporate additional clinical characteristics requested by the users and also a more modular layout that can be useful for care provider and family interactions. Our framework for creating an interactive and visual analytics platform enables generalized development of applications to synthesize, model, and translate electronic health data, thereby enhancing clinical decision support and improving care and health outcomes for chronic diseases and disorders. A prospective implementation study is necessary to evaluate this tool’s effectiveness regarding increased communication, enhanced shared decision-making, and improved clinical outcomes for patients with CF.
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