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From cause to care: Can a triple approach to better population data improve the global outlook of congenital heart disease?
American Journal of Medical Genetics Seminars in Medical Genetics, Part C ( IF 2.8 ) Pub Date : 2020-02-21 , DOI: 10.1002/ajmg.c.31775
Lorenzo D Botto 1
Affiliation  

Congenital heart disease (CHD) is common, costly, and critical. Approximately half of all infant deaths due to congenital anomalies are associated with CHD or neural tube defects. As infant mortality improves due to better infection control and peripartum care, congenital anomalies are becoming a key driver of pediatric survival and health. Improving CHD prevention and care globally will play a significant role toward key goals such as United Nation's sustainable development goals (SDGs) of good health and well-being (SDG 3) and reduced inequalities (SDG 10). This review addresses two questions: how can we reinterpret and reframe available data on CHD to spur action in prevention and care? How can we re-engineer how we currently track CHD in populations to efficiently generate new data to assess successes and detect gaps in prevention and care? Answering these questions requires understanding the causal chain of disease, from cause to CHD occurrence to health outcomes. This perspective provides a logical basis for two innovations. First, develop a data-driven message that reframes epidemiologic and clinical data in terms of incentives for action, evidence for change, and strategies for population-wide impact. Second, through partnerships between clinical and public health systems, implement an integrated "triple surveillance," which, in the same population, concurrently tracks the three elements of the causal chain-causes, disease occurrence, health outcomes. By streamlining activities and minimizing operational waste, such systems can have a vital role in improving prevention and care on a population level, including in many low and middle-income countries.

中文翻译:

从病因到照料:改善人口数据的三重方法能否改善先天性心脏病的全球前景?

先天性心脏病(CHD)常见,昂贵且危急。先天性异常导致的所有婴儿死亡中约有一半与冠心病或神经管缺陷有关。由于更好的感染控制和围产期护理,婴儿死亡率得以提高,先天性异常正成为小儿生存和健康的关键驱动因素。改善全球冠心病的预防和护理将对关键目标发挥重要作用,例如联合国的良好健康和福祉的可持续发展目标(SDG)(SDG 3)和减少不平等现象(SDG 10)。这篇评论解决了两个问题:我们如何重新解释和重构冠心病的可用数据,以促进预防和护理方面的行动?我们如何重新设计我们目前在人群中追踪冠心病的方式,以有效地生成新数据,以评估成功和发现预防和护理方面的差距?回答这些问题需要了解疾病的因果链,从原因到冠心病的发生再到健康结果。这种观点为两项创新提供了逻辑基础。首先,开发一种数据驱动的信息,从行动动机,变化证据和对全民影响的策略等方面来重新组织流行病学和临床数据。其次,通过临床和公共卫生系统之间的合作伙伴关系,实施集成的“三重监视”,该监视在同一人群中同时跟踪因果链原因的三个要素,疾病发生,健康结果。通过简化活动并最大程度地减少运营浪费,这样的系统可以在包括许多低收入和中等收入国家在内的人口一级改善预防和护理方面发挥至关重要的作用。
更新日期:2020-04-21
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